Assessing the sensibility, utility and implementation considerations of the Episodic Disability Questionnaire with older adults living with complex health needs: a cross-sectional measurement study

Abstract

Objectives

The Episodic Disability Questionnaire (EDQ) was developed to measure the presence, severity and episodic nature of disability experienced among persons with chronic conditions. Our aim was to assess the sensibility, utility and implementation considerations of the EDQ among older adults with complex health needs.

Design

Cross-sectional measurement study involving quantitative and qualitative methods of data collection. 

Participants

We recruited community-dwelling older adults (65 years of age or older) living with complex health needs receiving care from a primary healthcare team in Toronto, Canada.

Methods

We administered the EDQ, sensibility questionnaire (assessing face and content validity, and ease of usage, with each item scored from 0 to 7 with greater scores indicating greater sensibility) and demographic questionnaire, followed by a semi-structured interview in the home or clinical setting. Using an interview guide, we asked participants about their perspectives on utility, format and implementation of the EDQ in clinical practice. We considered the EDQ sensible if the median score on the sensibility questionnaire was ≥5/7 for ≥80% of items and if none of the items had a median score of ≤3/7. We conducted a team-based directed content analysis of the interview transcripts.

Results

The median age of the 11 participants in this study was 83 years of age. All participants reported living with two or more chronic health conditions, with osteoarthritis (n=5) and diabetes (n=4) most frequently reported. The EDQ met the criterion for sensibility as measured by the sensibility questionnaire. Interview data from participants (n=10) indicated that the EDQ represents the health-related challenges among this sample of older adults with complex health needs, captures the episodic nature of disability and was easy to use. Utility of the EDQ included providing clinicians with a holistic understanding of health challenges older adults face, aiding in intervention planning and measuring changes in disability over time. Six of the participants also expressed uncertainty as to how the EDQ specifically could be used by clinicians in their care. Considerations for implementation included mode of administration (paper or electronic) and the importance of communicating EDQ scores with older adults based on individual preferences.

Conclusions

The EDQ possesses sensibility and utility for use among this sample of older adults living with complex health needs in home or clinical care settings.

STRENGTHS AND LIMITATIONS OF THIS STUDY.

• To our knowledge, this is the first study to investigate the utility of the Episodic Disability Questionnaire to measure presence, severity and episodic nature of disability among older adults living with complex health needs.

• Strengths include our utilisation of the Episodic Disability Framework, Feinstein’s Framework of Sensibility, and engagement with older adults in the community to inform our approach.

• Our multimethods of data collection involving quantitative (questionnaires) and qualitative (interviews) in combination with our team-based analytical approach enabled an in-depth exploration into utility and considerations of use of the Episodic Disability Questionnaire in home and clinic-based settings with older adults with complex health needs.

• Results are limited to community dwelling older adults attending a primary care clinic in an urban setting in Toronto, Ontario, who were able to participate in an interview; this may limit transferability to older adults living in rural or remote settings, individuals who are not connected to primary care, and individuals with significant hearing, visual or cognitive impairments who were unable to participate in an interview or complete the questionnaires.

Introduction

Older adults, aged 65 years and older, represent approximately 10% of the global population, and approximately 18% of Canadians.¹,⁵ The proportion of older adults in Canada is expected to rise to between 22% and 30% by 2068 due to an increasing ageing population.²,⁵ Older adults experience an increased prevalence of complex health needs and chronic disease compared with younger individuals.⁵,⁸ Among older adults in Canada, 73% live with at least one of ten common chronic diseases, which include hypertension, periodontal disease, osteoarthritis, ischaemic heart disease, diabetes, osteoporosis, cancer, chronic inflammatory lung disease, asthma and mood and anxiety disorders.⁵ Multimorbidity, defined as the coexistence of two or more chronic health conditions, affects 37% of older Canadians, with potential under-reporting in older adults.⁵,⁷

Complex health conditions and multimorbidity experienced by older adults can lead to disability, defined as the health-related consequences of health conditions, including physical or cognitive impairments, mental-emotional health challenges, challenges with day-to-day activities, challenges to social inclusion and uncertainty or worry regarding the future.⁹ For older adults, multimorbidity has been linked with frailty, decreased physical function and independence.¹⁰,¹² Thirty percent (30%) of older adults living with multimorbidity experience cognitive impairments or mental health concerns, impacting their ability to engage in the management of their health conditions, leading to greater functional decline.^{5 13 14} Older adults may experience these health challenges episodically, with symptoms that vary in presence and severity over time.^{911 15},¹⁷ These health challenges can result in a shift in clinical care among individuals with complex chronic health conditions and multimorbidity towards a focus on living with, rather than recovering from, disease.

Standardised patient-reported outcome measures (PROMs) are self-reported questionnaires that can describe health outcomes over time while enhancing patient–clinician relationships.¹⁸,²¹ The Episodic Disability Questionnaire (EDQ) is a 35-item generic PROM established to assess the presence, severity and episodic nature of disability. The EDQ includes six domains: physical, cognitive, mental and emotional health challenges, uncertainty and worry about the future, difficulties with day-to-day activities and challenges to social inclusion.²² The EDQ was derived from the condition-specific HIV Disability Questionnaire (HDQ), informed by the Episodic Disability Framework.²² The HDQ was shortened to the 35-item Short Form HDQ (SF-HDQ) to increase feasibility in clinical or community-based settings.²³ The HDQ and SF-HDQ were the first HIV-specific PROMs of disability, acknowledging the multidimensional and episodic nature of disability experienced by adults living with HIV.²³ The EDQ is a generic disability measure that has broader applicability and potential to capture experiences of older adults with complex health needs; however its measurement properties beyond persons living with HIV are unknown

Measurement properties such as sensibility, validity and reliability ensure that PROMs are comprehensive, accurate and consistent for use among target populations.²⁴ Feinstein’s sensibility is a foundational measurement property that examines the practical applicability of a clinical index or tool to a given population for factors such as face and content validity, ease of usage and format of an outcome measure.^{25 26} The clinical utility of a PROM includes its ability to measure health challenges and changes over time, guide referrals to resources, support the setting of goals and foster communication and multidisciplinary approaches to patient care.²⁶ Implementation considerations include patient-centred approaches of administration and patients’ personal preferences when communicating scores among clinicians.²⁶ While clinicians reported that electronic PROMs (e-PROMs) can increase their workload, requiring higher levels of support for patients to complete, e-PROMs can decrease administrative duties, offer cost saving and prevent data entry errors compared with paper-based modes of administration.²⁷,³⁰ Travel time required with home care visits can limit time available for assessment and treatment with patients, posing barriers to PROM use. However, e-PROMs administered at home may help assess the potential fluctuating nature of health outcomes over time.^{31 32} Overall, the utility of, and considerations for implementing PROMs of disability with older adults with complex health needs are unclear. While the electronically administered EDQ demonstrated sensibility, validity and reliability for use with adults living with HIV in clinic or community-based settings, the sensibility, utility and implementation considerations for use with older adults with complex health needs in home-based or clinical settings are unknown.^{26 33 34}

Our aims were to (1) assess the sensibility (face and content validity, ease of use, format) of the EDQ among older adults with complex health needs, (2) explore the utility of the EDQ for use in clinical practice from the perspectives of older adults with complex health needs and (3) identify implementation considerations for the administration and communication of scores from the perspectives of older adults with complex health needs.

Methods

Study design

We conducted a cross-sectional multimethod measurement study involving quantitative (questionnaires) and qualitative (interviews) methods of data collection. We used the Consolidated Criteria for Reporting Qualitative research guidance to inform the write-up of this manuscript.³⁵

Study setting

The study was conducted at the St Michael’s Hospital Academic Family Health Team (SMHAFHT) Wellesley-St. James Town Health Centre in Toronto, Canada. The SMHAFHT serves 50 000 patients across five sites living in Toronto, Ontario, Canada, 17 000 of whom are older adults (65 years and older).³⁶ The Wellesley-St. James Town site provides home and clinical-based primary care to the Toronto community.³⁶ The home visit team is made up of two nurse practitioners, five physicians, one pharmacist supported by a geriatrician, social worker and a Local Health Integration Network Coordinator, and serves an increased proportion of older adults compared with other sites within the SMHAFHT. The SMHAFHT home visit team provides home-based care services for approximately 85 community dwelling older adults such as in-home clinical visits, for patients who cannot leave home to attend in-person clinical appointments.³⁶ The SMHAFHT home visit team was chosen as the study setting given the appropriateness of the patient population as primarily consisting of individuals living with multiple complex chronic health conditions and the potential for future clinical application of the EDQ.

Patient and public involvement

We consulted with two community-dwelling older adults living with complex health conditions who informed the data collection process. One person reviewed the EDQ and advised on its administration with older adults with complex health needs. The second person completed the EDQ electronically on a tablet and participated in a pilot in-person interview. This process enabled the team to develop strategies to facilitate the data collection process with older adults with complex health needs. Strategies included providing opportunities for breaks during data collection sessions, pacing our communication and questionnaire administration with participants and providing assistance to facilitate data collection if needed.

Participants

We recruited older adults (65 years of age or older) receiving home or in-clinic care from the SMHAFHT Wellesley-St. James Town site who could comfortably understand, speak and read English. Individuals were identified as having (1) complex health needs, and (2) cognitive, hearing and visual capacity to participate in the study as determined by their SMHAFHT clinician.

Recruitment

Clinicians from the SMHAFHT identified patients from their clinical caseload who met the inclusion criteria and acquired written or verbal consent to be contacted by a research team member by phone. Clinicians notified the study team about the patients who agreed to be contacted about the study. During the initial phone call, we described the study purpose and inquired about interest in participating in the study. For those interested, we scheduled a research visit at home or in clinic, with a reminder call prior to this scheduled visit. Recruitment occurred between January 2024 and March 2024, during which time the study team contacted all potential eligible participants identified by the SMHAFHT clinicians. We ceased recruitment after we contacted all potential eligible participants identified by the SMHAFHT clinicians.

Sampling

We used convenience sampling to recruit participants accessing the home visit team within the SMHAFHT.³⁷ The SMHAFHT serves a large and diverse population of Toronto, including individuals of various ages, socioeconomic status and ethnic backgrounds. The home visit team serves a subpopulation of approximately 85 patients from the SMHAFHT, who represent our target population of older adults with complex health needs.³⁶

Consent and ethics

We obtained written or verbal consent (confirmed by the signature of a member of the research team) from individuals who met the eligibility criteria to participate in the study at the beginning of the research visit (online supplemental file 1–Information Letter and Consent Form).

Data collection

Two researchers conducted data collection in-person, in the participant’s home, or in the SMHAFHT clinic located in the Wellesley-St. James Town neighbourhood of Toronto, Ontario. We administered the EDQ followed by both a sensibility and demographic questionnaire. Participants were given an option to complete the questionnaires: (1) independently electronically via tablet; (2) independently via paper-based questionnaire or (3) interviewer administered (researcher reads the questions and documents the responses on the tablet).³⁸ Following the questionnaires, we conducted a semi-structured interview. Participants received a $C40 gift card as a token of appreciation for participating in the study.

Questionnaires

Disability: the EDQ is a 35-item PROM developed to assess the presence, severity and episodic nature of disability across six domains: physical (10 items), cognitive (3 items), mental and emotional health challenges (5 items), uncertainty and worry about the future (5 items), difficulties with day-to-day activities (5 items) and challenges to social inclusion (7 items).^{22 23 26} Participants were asked to rate the presence and severity of each health-related challenge from 0 (not at all) to 4 (extremely) for all but 2 items, which had response options from 0 (not at all/not applicable) to 2 (extremely/I cannot do it), and 1 item with response options 0 (not at all) to 3 (very or extremely). For each item, participants were asked if the challenge had fluctuated over the previous week (yes/no). The final question of the EDQ asked if the participants were having a good day or a bad day. The EDQ possesses construct validity, internal consistency reliability (Cronbach α and Kuder-Richardson statistics >0.80) and test–retest reliability (interclass correlation coefficients ≥0.80 across all domains) with adults living with HIV recruited from clinical and community-based settings.²⁶

Sensibility: we administered a sensibility questionnaire that integrated Feinstein’s Sensibility Framework that includes seven domains: (1) purpose and framework, (2) comprehensibility, (3) replicability, (4) suitability of the output scale, (5) face validity, (6) content validity and (7) ease of usage.^{24 25} We used a sensibility questionnaire previously used to assess the sensibility of the SF-HDQ and refined the questionnaire based on previous sensibility assessment of the EDQ among persons with HIV.^{24 25 33 34} The questionnaire included 16 items asking about face validity (5 items), content validity (5 items), format and ease of usage (6 items) of the EDQ.^{24 25 33 34} Participants were asked to rate their agreement with statements about the EDQ using a 7-point ordinal scale ranging from 1 (highly disagree) to 7 (highly agree) (online supplemental file 2 – Sensibility questionnaire).

Demographic characteristics: the demographic questionnaire included 16 items about age, concurrent health conditions, income, living situation, functional mobility and overall perception of health to describe the personal and health characteristics of participants (online supplemental file 3 – Demographic questionnaire).

Interview

Sensibility, utility and implementation considerations: we conducted a semi-structured interview to assess the sensibility, utility and considerations of implementation of the EDQ. Coauthors (SKh, SC, JP, SKu, KW) included one man and four women, all of whom were Masters of Science in Physical Therapy student researchers from the University of Toronto who conducted the interviews in pairs (one interviewer; one observer). One researcher facilitated the interview and the second documented observational field notes. We developed a semi-structured interview guide from previous sensibility assessment of the SF-HDQ.^{24 33 34} The interview guide included seven sections to explore perspectives on sensibility, specifically inquiring about how the questionnaire was able to capture the nature and severity of their challenges (face and content validity), perspectives on the wording of the EDQ instructions and questions (format) and time to complete (ease of usage).³³ Participants were asked about their perspectives on how clinicians could use the EDQ and how it might inform their care (utility). Finally, we inquired regarding preferences for EDQ implementation, including administration (timing, method of delivery, who to administer, how and when) and preferences for scores delivery and communication to patients (method, format and timing of communication of scores) (online supplemental file 4 – Interview Guide). All interviews were audio recorded and transcribed verbatim.

Field notes

During the research visit, the second researcher documented observational field notes which included: physical environment descriptions, attendance of additional persons at the visit, use of assistive devices, chosen mode of EDQ administration, time required to complete the EDQ and any barriers or facilitators during the interview process (eg, speed of speech) using Microsoft Word.³⁹ Field notes were compiled with each participant’s interview transcript for context and further description of sensibility, utility and considerations for implementation of the EDQ.

Analysis

EDQ scoring

We calculated medians, and 25th and 75th percentiles for EDQ domain scores of the presence, severity and episodic scales. For presence and severity domain scores, we applied the scoring algorithm created through the Rasch logit scale for an interval scale score ranging from 0 to 100.²³ For the episodic domain scores, we calculated simple sums of each domain score, transformed to a scale of 0–100.²⁶ Higher scores indicate greater severity, presence and episodic nature of disability.²⁶

Sensibility questionnaire

We calculated medians, and 25th and 75th percentiles for each item on the sensibility questionnaire. Each item was scored from 0 to 7 with greater scores indicating greater sensibility. We considered the EDQ to be sensible for older adults with complex health needs if median scores were ≥5/7 for ≥80% of items and if none of the items had a median score ≤3/7, as used in previous sensibility assessment of the SF-HDQ.^{24 33 40}

Demographic questionnaire

We calculated frequencies and percentages for categorical variables (ie, gender, partnership status, ethno-racial background, household income), and medians, and 25th and 75th percentiles for continuous variables (ie, age).⁴¹

Interview data

We analysed interview data using a team-based directed content analysis. We used the components of Feinstein’s Framework of Sensibility to inform our analysis and completed a 7-step Framework Method of Thematic Analysis.⁴² We used a directed content analysis approach to identify codes related to sensibility, utility and implementation considerations.^{42 43} The steps of the analysis included the following:

1. Transcription: audio recordings were transcribed verbatim and field notes added to the transcript for context, using Microsoft Word.³⁹

2. Familiarisation with the interview: each transcript was reviewed two times by team members (SKh, SC, JP, SKu, KW) to familiarise themselves with the interview data and statements related to sensibility, utility and considerations for implementation of the EDQ.⁴²

3. Coding: all members of the team independently coded three transcripts using Microsoft Word and highlighted statements that referred to sensibility (face and content validity, ease of usage and format), utility and implementation considerations of the EDQ.

4. Developing a working analytical framework: each team member presented their sections of coded text and explained how it addressed the study objectives, after which a set of codes was created to establish our coding scheme. We devised a description of each code’s category (related to sensibility, utility and implementation considerations) along with a short description of the code. Three new transcripts were coded using the preliminary codes, while noting new codes or findings not included in the initial coding framework.⁴² We met again to revise the initial coding framework with code descriptions, resulting in an analytical framework to inform the analysis of the transcripts.⁴²

5. Applying the analytical framework: the analytical framework (coding scheme) was applied to each transcript. Two members of the team independently coded the remaining transcripts using the coding scheme in Microsoft Word.³⁹

6. Charting data into the framework matrix: after coding all transcripts, data were organised into a matrix using Microsoft Excel.⁴⁴ The matrix included: theme, subtheme, code, participant number and relevant participant quotes. Two team members compared codes for each transcript and discussed any differences in the coding process and codes.

7. Interpreting the data: we reviewed the matrix as a team to discuss themes⁴² and made connections from the matrix within and between participants and categories informed by our research objectives related to sensibility, utility and implementation, using Feinstein’s Sensibility Framework and new concepts derived inductively from the data.^{25 42} We conducted two team meetings to discuss impressions, ideas and interpretations of the data, and to discuss the overall findings related to our study objectives.

Sample size

Sample size estimation was determined by the qualitative (interview) component of the study design, informed by previous literature establishing the sensibility for the HDQ with 22 participants, SF-HDQ with 29 participants and the recommended 16–24 interviews to achieve a thorough understanding of interview data.^{24 33 45} We estimated we would achieve sufficient perspectives to establish sensibility and utility with 20 older adults with complex health needs based on previous sensibility assessment of the SF-HDQ with adults living with HIV.^{24 33 45} We estimated that 20 participants would be feasible to recruit according to SMHAFHT clinicians who estimated 25–30 individuals receiving care could meet the inclusion criteria. Originally, we planned to limit recruitment solely to patients from the SMHAFHT home visit team; however, we expanded our recruitment strategy to older adults receiving care at the SMHAFHT Wellesley-St. James Town site to meet the target sample size.

Results

Of the 26 individuals identified by clinicians and approached by the research team, 15 (58%) declined to participate due to lack of interest or potential discomfort of researchers entering their homes, and the inability to attend an appointment in the clinic, resulting in 11 (42%) who consented to participate. Data collection occurred between 11 March 2024 and 3 June 2024, where 10 visits were completed in the participants’ home, and 1 was completed in a private meeting space at the SMHAFHT clinic. Of the 11 participants, all completed the questionnaires and 10 completed the interview. Most participants chose to complete the questionnaires through interviewer administration (n=8), meaning questions and response options were read and participant responses were recorded on a tablet by the interviewer. The remaining participants chose self-administration on a tablet (n=1), with assistance on a tablet (n=1) and with assistance using paper-based mode of administration (n=1). The median time to complete the interview following questionnaire administration was 15 min (range: 10–25 min).

Participant characteristics

The median age of participants was 83 years, six identified as a woman and five identified as a man. Seven participants described their ethnic background as white (64%) followed by South Asian (n=1), Black (n=1) or Filipino (n=1). Participants began receiving care at SMHAFHT in 2021 (median year). Most of the participants (n=8) reported living alone. The functional capabilities of participants varied with the majority reporting leaving the house multiple times per week (n=7). The majority also reported requiring a mobility aid for indoor ambulation (n=8), or for outdoor use (n=9). See table 1 for an overview of characteristics of participants.

Table 1. Characteristics of participants (n=11).

Characteristics	Sample (n=11)
Personal Characteristics
Median age (in years) (25th, 75th percentiles)	83 (75, 88)
Gender identity	n (%)
Woman	6 (55)
Man	5 (45)
Living situation
Living alone	8 (73)
Highest level of education
Less than secondary school graduation	1 (9)
Secondary school diploma or equivalent	2 (18)
Some postsecondary education	2 (18)
Post-secondary certificate diploma or degree	5 (45)
Graduate degree	1 (9)
Average yearly household income
<$C10 000	1 (9)
$C10 000 to <$C20 000	2 (18)
$C20 000 to <$C30 000	3 (27)
>$C30 000	3 (27)
Chose not to respond	2 (18)
Main source of household income
Old age pension	8 (73)
Disability pension	1 (9)
Private pension	1 (9)
Dependent*	1 (9)
Health characteristics
Median year started receiving care from the family healthcare team (25th, 75th percentiles)	2021 (2012, 2022)
Self-reported general health status at present time	n (%)
Excellent	1 (9)
Very good	3 (27)
Good	3 (27)
Fair	1 (9)
Poor	3 (27)
Self-reported health conditions†
Osteoarthritis	5 (45)
Diabetes	4 (36)
Ischaemic heart disease	3 (27)
Osteoporosis	3 (27)
Mental health conditions	3 (27)
Hypertension	2 (18)
Periodontal disease	2 (18)
Chronic obstructive pulmonary disease	2 (18)
Cancer	1 (9)
Other‡	6 (55)
Mobility characteristics
Frequency of leaving the house	n (%)
Multiple times per week	7 (64)
Once monthly	2 (18)
Once weekly	1 (9)
Never	1 (9)
Mobility aid used outdoors
Rollator walker	3 (27)
Power wheelchair	2 (18)
Cane	2 (18)
Electric scooter	1 (9)
Manual wheelchair	1 (9)
Unable to leave place of residence	1 (9)
No mobility aid	1 (9)
Mobility aid used indoors
Rollator walker	3 (27)
Power wheelchair	2 (18)
Manual wheelchair	2 (18)
Cane	1 (9)
No mobility aid	3 (27)

^*Dependent describes individuals who were reliant on another person, such as family, for their income and financial status.

^†Conditions were derived from the Public Health Agency of Canada which reported these chronic conditions as the most prevalent in the Canadian senior population in 2020.

^‡Included conditions such as: stroke, hip fracture, transplant, kidney disease, atrial fibrillation.

EDQ characteristics of completion, and scores

The EDQ took a median of 12 min (range: 7–28 min) to complete. The highest EDQ severity and presence scores were reported within the challenges with day-to-day activities domain (median score: 38 and 78, respectively). Highest episodic scores were in the cognitive domain (median score: 33). All participants (n=11) reported having a ‘good day’ at the time of completion of the EDQ (table 2).

Table 2. Episodic Disability Questionnaire (EDQ) scores (n=11).

EDQ domain	Presence scores Median (25th, 75th percentile), (range 0–100)	Severity scores Median (25th, 75th percentile), (range 0–100)	Episodic scores Median (25th, 75th percentile), (range 0–100)
Physical	45 (37, 66), (0–66)	31 (24, 42), (0–50)	10 (5, 20), (0–40)
Cognitive	0 (0, 67), (0–100)	0 (0, 24), (0–68)	33 (33, 33), (33–67)*
Mental-emotional	41 (0, 50), (0–77)	26 (0, 35), (0–51)	10 (20, 50), (20–100)
Uncertainty	41 (22, 78), (0–100)	35 (9, 46), (0–70)	20 (20, 40), (20–80)
Day-to-day activities	78 (59, 89), (23–100)*	38 (30, 50), (26–64)*	20 (20, 30), (20–40)
Social inclusion	44 (25, 55), (0–82)	27 (15, 39), (0–46)	0 (0, 0), (0–14)

^*Indicate the highest score across the domains.

Sensibility, utility and implementation considerations of the EDQ

We described sensibility findings as derived from a combination of the sensibility questionnaire, interview data and field notes. Utility and implementation considerations data were derived solely from the interviews and field notes. We referenced quotes with each participant number (P).

Sensibility

Results from the sensibility questionnaire and interviews indicated that the EDQ possesses face and content validity and was easy to use among the sample of older adults living with complex health needs. The EDQ met our predefined criterion for sensibility, as each item had a median score of ≥5 and no item scored a median ≤3 ^{24 33 40} (table 3).

Table 3. Sensibility questionnaire scores (n=11).

Sensibility item	Median score (25th, 75th percentile)
Face validity
I was able to answer all the questions	5 (5, 7)
The instructions were clear and easy to understand	5 (5, 7)
The questions were clear and easy to understand	5 (5, 7)
The overall questionnaire makes sense	5 (5, 6)
The options for the questions were adequate	5 (5, 6)
Content validity
The questionnaire captured all elements of my disability	5 (5, 6)
The questionnaire included important items that are necessary to describe my disability	5 (5, 6)
The questionnaire included items that were repetitive or redundant	5 (4, 5)*
There were items missing in the questionnaire that should be included	5 (5, 5)*
I was able to find my answer in the list of possible answers to the questions	6 (6, 6)
Format and ease of usage
I felt that answering the questions helped me in some way	5 (5, 5)
The questionnaire took too long for me to complete	5 (5, 5)*
The questionnaire requires too much effort to complete	5 (5, 5)*
The questionnaire was easy to complete using the tablet	5 (5, 5)
I would like to receive a summary of my EDQ questionnaire scores…	5 (3, 5)
Overall, this questionnaire is useful in describing disability experienced by older adults accessing home-based care	5 (5, 5)

Scores for the sensibility questionnaire range from 1 to 7 (highly disagree to highly agree).

^*Reverse scored due to negatively phrased question.

EDQ, Episodic Disability Questionnaire.

Interview findings indicated that the EDQ items represented the health-related challenges (disability) that older adults with complex health needs face (face validity) had a wide range of response options, captured the episodic nature of disability (content validity) and highlighted the importance of mental-emotional health (content validity). Participants also indicated that the EDQ was easy to complete (ease of usage) and that they preferred an interviewer-administered questionnaire (format).

Representation of health-related challenges in the EDQ

Participants indicated that the EDQ captured the health-related challenges that they experience, was comprehensive and relatable to their lived experiences, with sufficient response options to capture these challenges. Participants remarked, ‘I can expect that I can explain myself better with those [EDQ] questions’ (P8) and that the EDQ had ‘plenty of options’ (P2). This was supported by results from the sensibility questionnaire statements; ‘The questionnaire captured all elements of my disability’ (median: 5/7), ‘The questionnaire included items that are necessary to describe my disability’ (median: 5/7) and ‘overall, this questionnaire is useful in describing disability experienced by older adults accessing home based care’ (median: 5/7).

Importance of capturing the episodic nature of disability

Participants had mixed opinions about the relevance of the episodic questions in the EDQ. One participant noted, ‘I don’t think that [the episodic scale] was necessary because everything stays pretty much the same’ (P1), while another noted that they could relate to the episodic questions saying that, ‘it would give insight as to what I am like, I think it would be helpful and they [clinicians] would know why I fluctuate back and forth’ (P4).

Importance of mental-emotional health challenges domain

Some participants (n=4) highlighted the importance of the mental-emotional health challenges domain in the EDQ and suggested that the domain could be further emphasised. One participant stated, ‘They should look at my mental state’ (P1). Another participant highlighted the importance of describing the mental-emotional challenges that older adults may face and stated, ‘one of my biggest problems has been … my emotional stress’ (P4).

Ease of usage and format

All participants (n=10) reported positive experiences when completing the EDQ. Many (n=8) described that the questionnaire was easy to understand and simple to complete. Most (n=9) reported that the length and time it took to complete the EDQ was reasonable. However, members of the research team observed eight participants requested that the EDQ be administered by the interviewer instead of completing the questionnaires on the tablet independently.

Over half of the participants (n=6) described that it would be difficult to complete the EDQ alone via tablet or paper: ‘Oh my gosh, I don’t know if I can do it by myself’ (P8). Members of the research team observed that most of the participants (n=10) required assistance completing the EDQ. Many participants also required clarification and repetition of the questions and response options while administering the EDQ. When asked ‘How much effort do you think it [the EDQ] would take to complete this questionnaire at home by yourself?’ one participant responded, ‘I wouldn’t even attempt it (referring to completing EDQ alone)’ (P9). Members of the research team also noted that some participants (n=7) had difficulties with concentration or memory during the interview portion of data collection. These challenges led to members of the research team restating questions and clarifying the questions asked during the interview.

Utility

During the interview, most participants (n=9) reported that the EDQ could be useful for both clinicians and older adults with complex health needs, to provide clinicians a holistic picture of the patient, assess changes in disability and foster conversations between patients and clinicians.

Usefulness in care

Of the 10 participants interviewed, 6 stated that they were unable to see the purpose or usefulness of the EDQ in their care, stating ‘I really don’t know what it would do’ (P1). When asked why they did not think the EDQ would be useful, one participant said ‘I doubt that they [clinicians] don’t already have the information and if they needed it, they would ask’ (P9). On the contrary, participants described that the EDQ could be used in clinical appointments to give clinicians a full picture of the health challenges that a patient experiences. One participant mentioned that ‘when it comes to a person like me initially, it would be very, very helpful to caregivers… because medical people or a therapist would have a much better idea of how I felt’ (P5). Another participant indicated that the EDQ could allow providers to better understand patients, ‘they’re getting to know what I am going through, what is bothering me in my body, and … how long it takes to do things and all that’ (P8).

Assessment and treatment planning

Participants noted that the EDQ may be useful for clinicians when planning for assessment and treatment with patients. When asked how the clinicians could use the questionnaire in the healthcare setting, one participant mentioned, ‘The EDQ can help healthcare providers guide care’ (P2) and another said: ‘Well, if they have it [referring to scores of the EDQ], I think it would make it [referring to treatment planning] easier for them’ (P1).

Facilitating communication with clinicians

Participants found the EDQ to have potential usefulness in facilitating conversations with clinicians. One participant mentioned that inclusion of the mental-emotional domain questions in the EDQ could help facilitate conversation about mental health with their clinician, stating, ‘I feel people need to have the option of being able to ask questions about their health issues and a situation like this gives you that opportunity…that’s how it would be helpful…if my depression got really, really bad. Having done the study. I have the opportunity to discuss it. It gives me more freedom to discuss it with my doctor’ (P13).

Monitoring and tracking health challenges over time

Finally, participants mentioned that the EDQ could be used to recognise disability and track patients’ health fluctuations. One participant mentioned, ‘that was helpful because now I can assess… where I am at this point… the questions helped me identify the health issues that I need to look at…The questions helped me to honestly admit the disabilities I have’ (P13). Another participant indicated that the EDQ was beneficial for increasing self-awareness of disability, ‘I learned something from it, there is a lot to learn from this about myself…I learned a little bit of myself that I didn’t even know’ (P6).

Implementation considerations

Considerations for administering the EDQ in clinical practice with this sample of older adults with complex health needs included (1) administration (mode, location and timing) and (2) process for communication of EDQ scores.

Mode, location and timing of administration

Members of the research team observed that six participants required assistive devices (eyeglasses, hearing aids) to complete the EDQ and one participant indicated they had a learning disability, affecting their ability to read. Most participants (n=8) preferred completing the EDQ with the interviewer asking the EDQ questions and inputting responses on the tablet. When asked why they preferred completing the EDQ through interview administration, two participants stated, ‘because when I read something, I lose track of what I am thinking’ (P1) and ‘because I talk more better than I can read to understand’ (P4). When asked where they would prefer to complete the EDQ in clinical care, 10 preferred to complete the EDQ in their home, while one participant preferred to complete the EDQ in a clinical environment. When asked about when the EDQ should be administered (prior to, during or after a visit), half of participants (n=5) indicated that they preferred the EDQ administration during their medical visit.

Communication of EDQ scores

The EDQ yields 18 domain scores (6 domains for each presence, severity and episodic scale) each ranging from 0 to 100 with higher scores indicating greater presence, severity and episodic disability. Of the 10 participants who completed the interview, 5 reported that they would want to know their EDQ scores after completion of the questionnaire. When asked why they would want to know their scores, one participant mentioned ‘I would like to know how I did’ (P6). On the contrary, five participants reported that they would not want their scores and one participant indicated that ‘no, it is not necessary’ (P5).

Participants had mixed preferences regarding how EDQ scores should be communicated to them in their care. When asked, ‘would you like your scores shared per item or per domain?’, two participants indicated that they preferred to see their responses to each item in the EDQ, five participants preferred to receive EDQ domain scores and two participants preferred both. When asked about their preferences, one participant mentioned, ‘per item, because if you did them any other way, I would not understand’ (P1), while another participant said ‘variety of scores (per item and per domain)…so I can understand whether you got the whole picture’ (P4).

When discussing how participants preferred their EDQ scores communicated to them, most (n=6) said they preferred a paper report of their EDQ scores in conjunction with a conversation with their clinician. One participant mentioned that they preferred, ‘a printed copy, so I can keep it, because I can keep going over it and looking at it… all the time… I can maybe share it with my doctor’ (P8). Another participant preferred, ‘a paper copy, because it is easier to understand and it’s tangible’ (P6). Finally, one participant mentioned having a conversation with their clinician would be important, ‘because of my physical limitations’ (P5).

Discussion

To our knowledge, this is the first study to investigate the application of the EDQ with a population of older community-dwelling adults living with complex health needs, within home and clinical settings. To date, the measurement properties (validity, reliability and sensibility) of the EDQ have been assessed with adults living with HIV via electronic administration in clinic and community settings.^{26 33 34} Results from this study support that the EDQ demonstrates sensibility for use with older adults living with complex health needs with interviewer-facilitated administration in the home or clinical settings. Participants described EDQ utility as providing clinicians a holistic picture of health challenges an individual might experience, facilitating plans for interventions and allowing patients to track their own healthcare needs over time. Implementation considerations for the EDQ included the importance of considering personal preferences for administration and communicating EDQ scores via personal preferences including paper-based reports in conjunction with a conversation with their clinician.

Results provide key considerations of sensibility, utility and implementation of the EDQ in this sample of older adults living with complex health needs within home and clinical settings. Strengths of this study included our multimethods of data collection, utilisation of the Episodic Disability Framework and Feinstein’s Framework of Sensibility, and engagement of older adults within the community to inform our process of data collection.^{9 25} We were unable to achieve our desired sample size of 20 participants and we did not achieve saturation. However, with the depth of interviews in combination with our observations of EDQ administration, we were able to capture perspectives from participants regarding the sensibility, utility and implementation of the EDQ, allowing us to achieve our study objectives. The EDQ was received favourably by participants, and participants reported enjoying having researchers in their home. This may have contributed to a social-desirability bias, whereby participants felt they should provide positive feedback about the EDQ. Our sample included older adults living in urban settings in Toronto, Ontario, Canada, attending a primary care clinic who possessed cognitive, hearing and visual capacity to participate in the study. While participants reported a financial status similar to the broader Canadian population of older adults, this sample included individuals with a higher level of education.²,⁵ This may limit transferability of our findings to the broader Canadian older adult population, including persons with greater complex health needs, persons with cognitive impairments and older adults living in rural or remote communities.

The EDQ possessed sensibility for use with older adults living with complex health needs in home and clinical care settings. Interview findings suggested participants found that the EDQ represented the health challenges they faced (face validity), had a wide range of response options (content validity), captured the episodic nature of disability (content validity) and felt the EDQ was simple and easy to complete (ease of use). Sensibility findings from our study pertaining to face and content validity, ease of use and format of the EDQ were similar to those described for the SF-HDQ and EDQ with community-dwelling adults living with HIV.^{33 34} Of note, studies examining the sensibility of the SF-HDQ used a self-administered electronic mode of administration,^{33 34} whereas participants in this study preferred to use an interviewer-assisted electronic mode of administration. Differences in the target population (older adults with complex health needs vs persons living with HIV), location (home and clinic settings) and mode of administration of the EDQ limit the ability to translate these findings beyond this sample population. The majority of participants in this study requested interviewer-assisted administration of the EDQ due to challenges with hearing or visual impairment. Hence, older adults with complex healthcare needs may have difficulty completing the EDQ independently. Previous literature described challenges and considerations using e-PROMs in the older adult population.⁴⁶ Further research should be conducted to facilitate the usage of the EDQ within this population.

The EDQ possessed utility for use with older adults in this study living with complex health needs. During the interviews, the majority of participants (n=9) indicated that the EDQ could be useful for both clinicians and older adults living with complex health needs in home or clinical care settings. Perspectives on EDQ utility, including informing individual care and measuring change in health over time identified in this study were similar to the utility of the SF-HDQ perceived by adults living with HIV in the clinical and community care settings.^{33 34} Nevertheless, six of the participants also reported that they were uncertain about how the EDQ specifically could be used by their clinicians in their care. This finding aligns with evidence whereby adults demonstrated variable tool utility in their care, may have difficulty understanding how tools may impact the care they receive and tended to rely on communication with their clinicians regarding care.⁴⁶ Questions in the interview examining the utility of the EDQ in this study focused on perspectives of the questionnaire’s usefulness to inform their individual care and did not ask about the perceived utility of the EDQ more broadly. While previous studies established the utility of the SF-HDQ from the perspectives of clinicians in clinical and community care settings, our study specifically explored perspectives from patient perspectives only.^{33 34} Clinicians in clinical and community-based settings reported the SF-HDQ was useful to facilitate communication, improve goal setting and track change over time, consistent with previous systematic review evidence of the usefulness of PROMs from the perspectives of clinicians and patients from diverse groups and across multiple care settings.^{18 33 34} However, we recognise the difficulty articulating utility of a PROM by healthcare providers from the patient perspective. Future research should examine the clinical usefulness of the EDQ, specifically from the perspectives of clinicians working with older adults in home and clinic-based settings.

A previous systematic review examining literature on the usability of e-PROMs, identified that older adults required increased assistance with e-PROMs at home and recommended tailored administration of the e-PROMs to the individual.⁴⁷ Systematic reviews of the application of e-PROMs examining patient, clinician and shareholder perspectives identified barriers to application including, time burden on clinicians and limited clinical time.⁴⁷ Similarly, sensibility assessment of the SF-HDQ in clinical and community settings found that clinicians reported time to complete as a challenge for implementing the tool electronically into these practice settings.^{33 34} In a previous study, 14 patients (median age: 74 years) and clinicians found that the average time completing an e-PROM in the home setting took 8.3 min, which did not negatively impact care goals.¹³ The median time required to complete the EDQ among participants in this study was 12 min, suggesting the EDQ may be similarly implemented in home or clinical settings with minimal time burden.

Overall, these findings suggest that when implementing the EDQ, clinicians may expand on the mental-emotional health domain through conversation and further questioning. Our findings also suggest that the application of the EDQ in this population should be tailored to personal abilities and preferences to facilitate ease of completion, which is consistent with recommendations of the implementation of the SF-HDQ.^{33 34} Future research should examine clinician perspectives on the utility and implementation considerations for the EDQ for use with older adults with complex health needs, to establish the usefulness of PROMs with this population in home and clinic-based settings. Furthermore, future research should consider strategies to facilitate the usage of the EDQ with older adults living with complex health needs, while minimising burden to clinicians and patients. Measurement property assessment of the EDQ should consider the location and modes of administration for this population, as measurement properties are context and population specific.²⁰

Conclusion

The EDQ possesses sensibility and utility for use among this sample of older adults living with complex health needs. Implementation considerations for the EDQ include the importance of personal preferences for mode of administration and communication of scores. Future work should focus on exploring applications of the EDQ with other populations, examining clinician perspectives on EDQ utility, and identifying strategies to facilitate the uptake of the EDQ with older adults living with complex health needs.