Skip to main content
NCBI home page
NIHPA Author Manuscripts logoLink to NIHPA Author Manuscripts
. Author manuscript; available in PMC: 2024 Jul 1.
Published in final edited form as: Early Interv Psychiatry. 2022 Oct 6;17(7):662–669. doi: 10.1111/eip.13360

Show Me You Care: A patient- and family-reported measure of care experiences in early psychosis services

Srividya N Iyer 1,#, Aarati Taksal 2, Ashok Malla 3, Helen Martin 4, Mary Anne Levasseur 5, Megan A Pope 6, Thara Rangaswamy 7, Padmavati Ramachandran 8, Greeshma Mohan 9
PMCID: PMC10076446  NIHMSID: NIHMS1838118  PMID: 36200407

Abstract

Aim

Despite their emphasis on engagement, there has been little research on patients’ and families’ experiences of care in early intervention services for psychosis. We sought to compare patients’ and families’ experiences of care in two similar early psychosis services in Montreal, Canada and Chennai, India. Because no patient- or family-reported experience measures had been used in a low- and middle-income context, we created a new measure, Show me you care. Here we present its development and psychometric properties.

Methods

Show me you care was created based on the literature and stakeholder inputs. Its patient and family versions contain the same nine items (rated on a 7-point scale) about various supportive behaviors of treatment providers towards patients and families. Patients (N=293) and families (N=237) completed the measure in French/English in Montreal and Tamil/English in Chennai. Test-retest reliability, internal consistency, convergent validity, and ease of use were evaluated.

Results

Test-retest reliability (intra-class correlation coefficients) ranged from excellent (0.95) to good (0.66) across the patient and family versions, in Montreal and Chennai, and in English, French, and Tamil. Internal consistency estimates (Cronbach’s alphas) were excellent (≥0.87). The measure was reported to be easy to understand and complete.

Conclusion

Show me you care fills a gap between principles and practice by making engagement and collaboration as central to measurement in early intervention as it is to its philosophy. Having been co-designed and developed in three languages and tested in a low-and-middle-income and a high-income context, our tool has the potential for global application.

Keywords: early intervention, patient-reported experience measure (PREM), family-reported experience measure (FREM), low-and middle-income countries, psychosis

Introduction

Early intervention for psychosis is often seen as a landmark reform in psychiatry (McGorry, Killackey, & Yung, 2008). It has been characterized by its focus on “when” to deliver interventions (i.e., the first 2–5 years after onset), but even more so by its philosophical emphasis on “how” to deliver them. Underpinned by hope, optimism, and recovery, early intervention services for psychosis have emphasized engagement, collaboration, therapeutic alliance, and shared decision-making (IRIS, 2012; Orygen, 2016).

Acknowledging the young age of most patients at the onset of psychosis and the overwhelming evidence for the benefits of involving families in treatment, such services have also positioned families/carers as key partners in care (Bertolote & McGorry, 2005). In fact, guidelines for early intervention consistently recommend that treatment teams maintain regular contact with families/carers, engaging them, and building their capacity to effectively support their ill young family members (IRIS, 2012; Orygen, 2016). For many young people and their families, early intervention services represent the first encounter with the mental health system, at least for psychosis. Therefore, positive experiences of care early on can promote longer-term trust and treatment adherence (Allard, Lancaster, Clayton, Amos, & Birchwood, 2018; Hansen, Stige, Davidson, Moltu, & Veseth, 2018).

Despite early intervention services for psychosis thus being patient- and family-oriented, there has been surprisingly little research on patients’ and families’ experience of the care process in these services. Exceptions to this are some studies on patients’ satisfaction with care and therapeutic alliance (Hasson‐Ohayon et al., 2021; Wong et al., 2020). Furthermore, few patient-reported experience measures (PREMs) and family-reported experience measures (FREMs) have been created for early psychosis services (Ferrari et al., accepted manuscript; Wong et al., 2020). Two efforts are however noteworthy, including the youth mental health service satisfaction measure developed in the context of the Australian headspace initiative (Simmons et al., 2014) and the youth services survey included in PhenX, the U.S initiative to harmonize measurement in coordinated speciality care centres for early psychosis ((Brunk, Koch, & McCall, 2000; Hamilton et al., 2011). This limited use of PREMs and FREMs in early psychosis is also reflected in the broader psychosis/schizophrenia literature (Trujols et al., 2013).

This gap is important to address because patient- and family-reported measures have been deemed essential from ethical, clinical, and institutional standpoints (Roe, Slade, & Jones, 2022) and for ensuring health care quality (OECD, 2017). Besides giving patients and families a voice in their own care, such measures can improve alliance, and provide useful information to guide treatment decision-making and quality improvement efforts (Black, 2013).

In our large comparative study of first-episode psychosis in two different socio-economic settings (Chennai, India and Montreal, Canada), we sought to document and compare patients’ and families’ experiences of care. Our aim was to examine site differences in the extent to which patients and families reported their treating teams exhibiting a core set of supportive actions/behaviors that were aligned with the general spirit of early intervention.

Because no PREM or FREM was available to measure this construct in a low- and middle-income (LMIC) or a cross-cultural context, we created a new PREM and FREM called Show me you care. In this report, we present the development and psychometric properties of this new measure. Our objective was to develop a user-friendly PREM and FREM that has the potential for application in early psychosis services and research globally.

2. Method

2.1. Research context

The present study was part of a larger cross-national research study (Iyer et al., 2020; Malla et al., 2020) conducted at two similar early intervention services for psychosis in Chennai, India and Montreal, Canada from 2012–2018. Patients and families in Chennai were recruited from the first-episode psychosis clinic of the Schizophrenia Research Foundation (SCARF), a non-governmental, not-for-profit community mental health organization. In Montreal, participants were recruited from two nodes of the Prevention and Early Intervention Program for Psychosis (PEPP) affiliated with McGill University (Iyer, Jordan, MacDonald, Joober, & Malla, 2015).

Aligned with the international guidelines for early intervention for psychosis (IRIS, 2012; Ministry of Health and Long-Term Care, 2011), the Chennai and Montreal programs offer a similar two-year course of intensive treatment delivered by a multidisciplinary team (case managers, psychiatrists, other allied health professionals). Treatment includes flexible use of low-dose, second-generation antipsychotic medication, case management, family psychoeducation and, on an as-needed basis, other interventions (e.g., cognitive-behavior therapy).

The study was approved by the respective institutional ethics boards in Montreal and Chennai, and all participants gave informed consent. Participants younger than 18 years, provided assent and their parents/guardians provided consent.

2.2. Participants

At both sites, patients were included if they were 16–35 years old; had a diagnosis of schizophrenia-spectrum disorder or affective psychosis based on the Structured Clinical Interview for DSM IV-TR (First, Spitzer, Gibbon, & Williams, 2002); had not been previously treated for more than 30 days; and could communicate in English/ French in Montreal and English/ Tamil in Chennai. Those with organic or substance-induced psychosis, an IQ<70, or a pervasive developmental disorder were excluded. Comorbid substance use was not an exclusion criterion. Family members were parents, partners, siblings, and others.

The current report is based on data from (1) a standardization sample comprising patients with first-episode psychosis (31 in Montreal, 29 in Chennai) and family members (31 in Montreal, 27 in Chennai) and (2) the larger study sample which has been described in earlier publications (128 patients and 102 families in Montreal; 165 patients and 135 families in Chennai) (Iyer et al., 2020; Malla et al., 2020). From the standardization sample, 21 patients from both sites provided feedback on the measure.

2.3. Procedure

We estimated the test-retest reliability, internal consistency, convergent validity, and perceived usability of Show me you care. To estimate test-retest reliability, the standardization sample completed this measure twice, approximately two weeks apart. Data from the larger study sample were used to estimate internal consistency and convergent validity. Validity was assessed against well-established measures of positive symptoms of psychosis, trust in one’s physician and satisfaction with services, and against amount of contact between families and the treating team (for the FREM).

2.4. Measures

All assessments were administered by trained research staff in French/English in Montreal and Tamil/English in Chennai, depending on the preference of the participants.

2.4.1. Show me you care: Development and description

Show me you care was informed by a review of pertinent literature, including on the philosophy of early intervention for psychosis (IRIS, 2012). Items that reflected behaviors of treating teams prioritized in early intervention (e.g., providing information, being respectful) were co-generated by researcher SI and MAL, a family member of a youth with psychosis. The focus on actions/behaviors of treating teams was derived from preliminary focus groups and consultations with stakeholders at the two sites. In addition, this focus was also motivated by study team members (researchers, clinicians and patient/family partner) (a) desiring a brief measure and (b) acknowledging that some other aspects were often fixed and common (e.g., both participating sites in this study offered treatment for two years) and that other aspects were not immediately malleable (e.g., location of the service). A beta version of the measure was shared with four patients (two at each site); the family peer support group at PEPP; two family members at SCARF; and core members of the PEPP and SCARF clinical-research teams. Their feedback was used to refine the measure, its instructions, and the wording of each item, as is reflected in the final scale.

The PREM and FREM versions of Show me you care contain the same nine statements (Supplemental material 1) about various supportive behaviors that can be demonstrated by treating team members (e.g., case managers and doctors) towards patients and families. These items are rated by respondents on a 7-point Likert-type scale (1=strongly disagree; 7=strongly agree), indicating the extent to which they think their treating team displayed the said behaviors. The scores on the nine items can be summed to provide a total score (range = 9–63), with higher scores indicating that the treating team was perceived as displaying more supportive behaviors. There are two optional items that do not contribute to the total. In the first, patients and families can indicate which of the nine supportive behaviors they found most and least important. The second invites respondents to provide open-ended comments on any other important qualities of their treating team.

The final version was translated and back-translated into Tamil in Chennai and Canadian French in Montreal using standardized procedures recommended by the World Health Organization (WHO, 2019).

Show me you care was completed by patients and families in the larger study at Months 3, 12 and 24.

2.4.2. Feedback questionnaire:

Feedback on the ease of comprehension and completion of Show me you care was gathered using two single items rated on a 10-point Likert-type scale (higher scores indicated greater ease).

2.4.3. Trust in physicians/providers:

The Abbreviated Wake Forest Trust in Physician Scale (Dugan, Trachtenberg, & Hall, 2005) is a psychometrically sound and widely used tool to examine trust in physicians/providers. The scale was completed at Months 3, 12 and 24 by patients and families as part of our larger study. A total score was calculated for the trust scale, with higher scores indicating greater trust in the treating physician. We expected a positive association between scores on Show me you care and patients’ and families’ trust in their physicians.

2.4.4. Satisfaction with mental health services:

Patients’ responses to a single item (how satisfied or dissatisfied are you with the mental health service you use?) from the Satisfaction subscale of the Wisconsin Quality of Life, (Becker, Shaw, & Reib, 1995) that was rated on a 7-point Likert-type scale (1= very dissatisfied; 7= very satisfied) were used in the present study. We expected a positive association between scores on Show me you care and patients’ satisfaction with the mental health services they had received at Months 12 and 24.

2.4.5. Positive symptoms:

Positive symptoms were assessed at Month 3 with the Scale for the Assessment of Positive Symptoms (Andreasen, 1984). Previous research has reported an inverse relationship between psychiatric symptoms and levels of treatment satisfaction and working alliance (Katsakou & Priebe, 2006; Neale & Rosenheck, 1995). Accordingly, we hypothesized that there would be a negative association between symptoms and Show me you care scores, as higher positive symptom severity may color perceptions about the treating team.

2.4.6. Contact between families and treating teams:

A monthly record of contact between families and their treating teams was maintained throughout the study. The total number of months for which there was contact (ranging from 0–24) was computed for each family. We predicted a positive association between scores on the family version of the Show me you care and the amount of contact between families and treating teams.

2.5. Data analyses

Data were analyzed using SPSS v20 for Windows (IBM, 2011). Group data were represented as means, SDs, and percentages, and compared using independent samples t-tests and chi square (χ2). Intra-class correlation coefficients (ICCs) using two-way random model with absolute agreement and single measure (ICC2,1) were computed to assess the test-retest reliability of Show me you care for each site, stakeholder, and language (Koo & Li, 2016). The ICCs were interpreted as: “poor” (ICC < 0.40), “fair” (0.40–0.59), “good” (0.60–0.74) and “excellent” (ICC > 0.75) (Cicchetti, 1994). Cronbach’s alpha was used to calculate internal consistency and interpreted as acceptable >0.70, good >0.80, and excellent >0.90 (Taber, 2018). Validity was assessed by calculating appropriate correlation coefficients for the relationship between our PREM/FREM and measures of symptoms, satisfaction with services, trust in treating team, and contact between families and treating teams. All data were interpreted with two-tailed alpha 0.05 as the significance level.

3. Results

3.1. Sample description (Table 1)

Table 1.

Demographics of the standardization sample

Montreal (N=31) Chennai (N=29) Statistical Test P value
Patient Sample N (%); Mean (SD) N (%); Mean (SD)
Age at entry (years) 24.00 (5.22) 26.31 (5.10) t(58) =1.72 0.09
Education (years) 12.26 (2.23) 12.62 (3.91) t(43.84) =0.48 0.637
Gender:
Men 19 (61.29%) 15 (51.72%) χ2(1) = 0.24 0.455
Women 12 (38.71%) 14 (48.28%)
Language:
English 18 (58.06%) 8 (28.57%) χ2(1) = 5.19 0.023
French / Tamil 13(41.93%) 20 (71.43%)
Montreal (N=31) Chennai (N=27)
Family Sample N (%) N (%) Statistical Test P value
Age range in years 21–30 3 (9.68) 3 (11.11) χ2 (4) =15.11 0.004
31–40# 1 (3.23) 11 (40.74)
41–50 5 (16.13) 2 (7.41)
51–60 18 (58.06) 11 (40.74)
61–70 4 (12.90) 0
Gender Men 6 (19.35) 13 (48.15) χ2 (1) =5.43 0.02
Women# 25 (80.65) 14 (51.85)
Education Less than high school 1 (3.22) 1 (3.70) χ2 (5) =19.87 0.001
High school# 7 (22.58) 20 (74.07)
College/vocational degree/ Diploma 8 (25.81) 1 (3.70)
Bachelor’s degree 12 (38.71) 2 (7.41)
Master’s degree 3 (9.68) 2 (7.41)
Doctoral degree 0 1 (3.70)
Relationship with patient  Parent# 25 (80.65) 13 (48.15) χ2 (3) =11.30 0.01
Spouse/ Partner# 0 7(25.93)
Sibling 4 (12.90) 6(22.22)
Other 2 (6.45) 1 (3.70)
Language English 17 (54.84) 4 (14.81) χ2 (1) =6.89 0.008
French (M)/Tamil (C) 14 (45.16) 23 (85.19)
Open in a new tab

In Chennai, demographic data was missing for one of the family members.

#

indicates significant post hoc differences between sites

Montreal (N=31) and Chennai (N=29) patients in the standardization sample were comparable on age, gender distribution, and years of education. The number of English- and French-speaking patients were comparable in Montreal, but there were significantly more Tamil- than English-speaking patients in Chennai. Compared to the Chennai family sample (N=28), the Montreal family sample (N=31) included more women; older individuals; parents and persons with university education. The Chennai family sample had more spouses and persons with a high school education.

Supplementary Tables 1 and 2 provide sociodemographic and clinical information on patients and families from the larger study.

3.2. Reliability estimates

The test-retest reliability of the patient and family versions of Show me you care in Montreal and Chennai ranged between good and excellent (Table 2). The ICC2,1 for each language was excellent.

Table 2.

Test-retest reliability and internal consistency of Show me you care

Test-retest reliability
Rater Sample N ICC (2,1) 95% CI
Patients Total 59 0.778 0.653–0.862
Montreal 30 0.666 0.412–0.825
Chennai 29 0.952 0.902–0.977
Families Total 58 0.857 0.771–0.913
Montreal 30 0.859 0.727–0.93
Chennai 28 0.75 0.528–0.876
Language French (Patient N=13) (Family N=15) 28 0.72 0.483–0.859
English (Patient N=26) (Family N=19) 45 0.843 0.733–0.91
Tamil (Patient N=20) (Family N=23) 43 0.754 0.588–0.859
Internal consistency
Rater Sample N No of items Cronbach’s α
Patient Total 227 9 0.906
Montreal 97 9 0.942
Chennai 130 9 0.872
Family Total 205 9 0.975
Montreal 74 9 0.96
Chennai 131 9 0.983
Open in a new tab

All correlation coefficients were statistically significant (p < 0.05).

Cronbach’s alphas for the PREM and FREM at each site were above 0.87, indicating excellent internal consistency.

3.3. Convergent validity

Kolmogorov-Smirnov test indicated that patient and family data related to Show me you care, symptom severity, trust in physicians, and satisfaction with mental health services were not normally distributed. Therefore, all correlations were assessed using Spearman’s rho.

Significant, moderate to strong positive associations were found between patients’ Show me you care scores and total scores on the trust scale (rho=0.68, p<0.001, 95% CI [0.56, 0.78] N=95 at Month 3; rho=0.69, p<0.001, 95% CI [0.56, 0.79] N=87 at Month 12; and rho=0.73, p<0.001, 95% CI [0.57, 0.84] N=54 at Month 24) in Montreal and Chennai (rho=0.86, p<0.001, 95% CI [0.81, 0.90] N=130 at Month 3; rho=0.58, p<0.001, 95% CI [0.47, 0.69] N=140 at Month 12; and rho=0.65, p<0.001, 95% CI [0.55, 0.74] N=162 at Month 24). This indicated that a higher level of trust in treating physicians was associated with more positive evaluations of treating teams.

Significant, moderate, positive associations were found between patients’ Show me you care scores and their satisfaction with their mental health services in Montreal (rho=0.47, p<0.001, 95% CI [0.29, 0.62] N=88 at Month 12; and rho=0.47, p<0.001, 95% CI [0.23, 0.66] N=55 at Month 24) and Chennai (rho=0.21, p=0.013, 95% CI [0.04, 0.37] N=135 at Month 12; and rho=0.26, p=0.001, 95% CI [0.10, 0.41] N=155 at Month 24). Correlations were relatively smaller in Chennai compared to Montreal but still significant, suggesting that those with a positive perception of their treating team were also likelier to be satisfied with the mental health services they were receiving and vice-versa.

Strong positive associations were found between family members’ Show me you care scores and their total scores on the trust scale (rho=0.64, p<0.001, 95% CI [0.48, 0.77] N=70 at Month 3; rho=0.70, p<0.001, 95% CI [0.56, 0.80] N=78 at Month 12; and rho=0.75, p<0.001, 95% CI [0.61, 0.85] N=55 at Month 24) in Montreal and Chennai (rho=0.77, p<0.001, 95% CI [0.69, 0.83] N=131 at Month 3; rho=0.65, p<0.001, 95% CI [0.54, 0.75] N=127 at Month 12; and rho=0.63, p<0.001, 95% CI [0.52, 0.73] N=132 at Month 24).

We found a modest yet significant negative correlation between patients’ total scores on Show me you care and positive symptom severity scores in Montreal (rho=−0.22, p=0.031, 95% CI [−0.41, −0.02] N=94), but not in Chennai (rho=−0.14, p=0.127, 95% CI [−0.32, 0.05] N=120). As expected, a lower level of positive symptoms was associated with a more positive evaluation of treating teams.

In Montreal, we found a trend towards a significant positive association between families’ total Show me you care scores and the number of months of contact that they had with their treating teams over a two-year course (rho=0.26, p=0.067, 95% CI [−0.03, 0.51] N=50). Associations could not be computed in Chennai because all family members had 24 months of contact with their treating teams.

Overall, these correlational values being significant and in the predicted direction support the convergent validity of the patient and family versions of Show me you care at both sites.

3.4. Feedback analysis:

At both sites, patients indicated that Show me you care was easy to understand (Mean = 9.09±1.04 in Montreal and Mean = 8.90±0.87 in Chennai) and complete (Mean = 8.72±1.48 in Montreal and Mean = 9.10±0.73 in Chennai).

4. Discussion

Working with stakeholders, we created Show me you care, a novel measure that allows patients and families to rate their experiences with their early psychosis care providers. The PREM and FREM versions had excellent test-retest reliability, internal consistency, and convergent validity in two distinct geo-cultural contexts (Chennai, India and Montreal, Canada) and in three languages (Tamil, French, and English). The only exception was the lack of association between Show me you care scores and positive symptom severity in Chennai. In Montreal, this association was significant, albeit weak. This is reassuring in that it indicates that treating teams’ behaviors towards patients are minimally influenced by patients’ symptom severity, and that patients’ evaluations of their treating teams are associated with their experiences of care as being supportive or not, rather than by their symptom levels (Barrowclough, Meier, Beardmore, & Emsley, 2010).

Show me you care fills an existing gap between principles and practice by making collaboration and engagement as central to measurement in early intervention services for psychosis as they avowedly are in their philosophy. It enriches the field by empowering patients and families to express and make measurable the extent to which they feel supported by treating teams. Not only is this important in itself, but it can also serve as feedback to care providers on whether their actions should be maintained or modified. Indeed, using the measure can facilitate open dialogue and improve communication between all stakeholders, and thereby engender therapeutic alliance (Roe et al., 2022) and service engagement (Allard et al., 2018; Tindall, Simmons, Allott, & Hamilton, 2018).

Strengths:

To our knowledge, Show me you care is the first brief PREM and FREM to explicitly evaluate the behaviors of treating teams, a construct related to, but separate from, user satisfaction. The measure translates the abstract concept of “experience” into measurable and potentially malleable behaviors of care providers. Having been developed with the participation of patients, families, and clinicians, in three languages and tested in a low-and middle-income and high-income context, the measure has the potential for global application. Further, it allows comparisons of patient and family experiences of care.

Limitations:

Test-retest reliability of Show me you care was established on a relatively modest-sized sample. However, internal consistency and convergent validity were based on larger samples. A limitation of Show me you care is that it does not capture many aspects that influence patient and family experiences of care such as the quality of infrastructure, timing/duration/location of services, stigma, waiting times, etc. (Bleustein et al., 2014). Conversely, its sharp focus on treating team’s behaviors and its brevity are also its strengths.

Implications:

By reporting whether, and to what extent treating teams demonstrate certain supportive behaviors, patients and families can influence how early intervention care is delivered day to day (Turner, Aiyegbusi, Price, Skrybant, & Calvert, 2020). Making patient- and family-reported data on their care experiences available in real time can improve treating team’s capacity to provide more responsive, higher-quality services, and thereby impact patient outcomes (Reese, Norsworthy, & Rowlands, 2009). It would be beneficial for future research to validate Show me you care in other geo-cultural contexts. As patients and families become more involved as partners in care and research, tools such as Show me you care will need to continue being developed, elaborated upon, and refined to accurately measure their lived experiences of care and participation.

Supplementary Material

Supplementary_materials_Show Me You Care_1838118

Acknowledgement:

We thank the PEPP and SCARF teams, patients, and families; Nicole Pawliuk for organization and management of data; Heleen Loohuis, Kevin MacDonald and Emily Schorr for supporting project coordination; and Dr. Howard C. Margolese for facilitating data collection at the PEPP-MUHC program.

Funding:

This research was funded by an R-01 grant (no. 5R01MH093303- 05) and an associated supplemental grant (no. R01MH093303-04) from NIH, and a CIHR grant (Iyer). Iyer received a salary award from the Canadian Institutes of Health Research and a salary award from the Fonds de recherche du Québec-Santé. Malla was funded by the Canada Research Chairs program. The funding source had no further role in study design, data collection and analysis, writing of the report, and in the decision to submit the report for publication.

Abbreviations:

PREM

Patient-Reported Experience Measure

FREM

Family-Reported Experience Measure

Footnotes

Declaration: None of the authors have any conflicts of interest in relation to the submitted work. A part of the data was presented by Martin at the EPION conference (November 2019, Toronto) as a poster.

Contributor Information

Srividya N. Iyer, Department of Psychiatry, McGill University, Montreal; Prevention and Early Intervention Program for Psychosis (PEPP-Montreal), Douglas Mental Health University Institute, Montreal, Canada.

Aarati Taksal, Prevention and Early Intervention Program for Psychosis (PEPP-Montreal), Douglas Mental Health University Institute, Montreal, Canada.

Ashok Malla, Department of Psychiatry, McGill University, Montreal; and Prevention and Early Intervention Program for Psychosis (PEPP-Montreal), Douglas Mental Health University Institute, Montreal, Canada.

Helen Martin, Department of Psychiatry, McGill University, Montreal; Prevention and Early Intervention Program for Psychosis (PEPP-Montreal), Douglas Mental Health University Institute, Montreal, Canada.

Mary Anne Levasseur, Citizen-Family partner, Montreal, QC, Canada.

Megan A. Pope, Prevention and Early Intervention Program for Psychosis (PEPP-Montreal), Douglas Mental Health University Institute, Montreal, Canada

Thara Rangaswamy, Schizophrenia Research Foundation (SCARF), Chennai, India.

Padmavati Ramachandran, Schizophrenia Research Foundation (SCARF), Chennai, India.

Greeshma Mohan, Schizophrenia Research Foundation (SCARF), Chennai, India.

Availability of data and materials:

The measure reported on in this paper, Show me you care, is included as supplementary material. The Show me you care measure is free of cost for non-commercial use with the permission of and credit to its chief creator and the corresponding author of this article at srividya.iyer@mcgill.ca. Contact the author for any desired modifications/translations of the scale. The datasets generated and/or analysed during the current study are not publicly available due to ethics approval from participants not covering public sharing but are available from the corresponding author on reasonable request.

References

  1. Allard J, Lancaster S, Clayton S, Amos T, & Birchwood M (2018). Carers’ and service users’ experiences of early intervention in psychosis services: implications for care partnerships. Early Intervention in Psychiatry, 12(3), 410–416. [DOI] [PubMed] [Google Scholar]
  2. Andreasen NC (1984). Scale for the Assessment of Positive Symptons:(SAPS): University of Iowa. [Google Scholar]
  3. Barrowclough C, Meier P, Beardmore R, & Emsley R (2010). Predicting therapeutic alliance in clients with psychosis and substance misuse. The Journal of nervous and mental disease, 198(5), 373–377. [DOI] [PubMed] [Google Scholar]
  4. Becker MA, Shaw BR, & Reib LM (1995). Quality of life assessment manual. Madison: University of Wisconsin. Wisconsin. [Google Scholar]
  5. Bertolote J, & McGorry P (2005). Early intervention and recovery for young people with early psychosis: consensus statement. The British journal of psychiatry, 187(S48), s116–s119. [DOI] [PubMed] [Google Scholar]
  6. Black N (2013). Patient reported outcome measures could help transform healthcare. Bmj, 346. [DOI] [PubMed] [Google Scholar]
  7. Bleustein C, Rothschild DB, Valen A, Valatis E, Schweitzer L, & Jones R (2014). Wait times, patient satisfaction scores, and the perception of care. Am J Manag Care, 20(5), 393–400. [PubMed] [Google Scholar]
  8. Brunk M, Koch JR, & McCall B (2000). Report on parent satisfaction with services at community services boards. Richmond, VA: Virginia Department of Mental Health, Mental Retardation, and Substance Abuse Services. [Google Scholar]
  9. Cicchetti DV (1994). Guidelines, criteria, and rules of thumb for evaluating normed and standardized assessment instruments in psychology. Psychological Assessment, 6(4), 284–290. [Google Scholar]
  10. Dugan E, Trachtenberg F, & Hall MA (2005). Development of abbreviated measures to assess patient trust in a physician, a health insurer, and the medical profession. BMC Health Services Research, 5(1), 64. doi: 10.1186/1472-6963-5-64 [DOI] [PMC free article] [PubMed] [Google Scholar]
  11. Ferrari M, Pawliuk N, Pope M, MacDonald K, Boruff J, Shah J, … Malla A, Iyer SN (accepted manuscript). A scoping review of measures used in early intervention services for psychosis. Psychiatric Services. [DOI] [PubMed] [Google Scholar]
  12. First MB, Spitzer RL, Gibbon M, & Williams JB (2002). Structured clinical interview for DSM-IV-TR axis I disorders, research version, patient edition (SCID-I/P). New York: Biometrics Research Department, New York State Psychiatric Institute. [Google Scholar]
  13. Hamilton CM, Strader LC, Pratt JG, Maiese D, Hendershot T, Kwok RK, … Haines J (2011). The PhenX Toolkit: get the most from your measures. Am J Epidemiol, 174(3), 253–260. doi: 10.1093/aje/kwr193 [DOI] [PMC free article] [PubMed] [Google Scholar]
  14. Hansen H, Stige SH, Davidson L, Moltu C, & Veseth M (2018). How do people experience early intervention services for psychosis? A meta-synthesis. Qualitative Health Research, 28(2), 259–272. [DOI] [PubMed] [Google Scholar]
  15. Hasson‐Ohayon I, de Jong S, Igra L, Carter SA, Faith LA, & Lysaker P (2021). Longitudinal changes in therapeutic alliance with people with psychosis: Relationship between client and therapist assessments. Clinical Psychology & Psychotherapy. [DOI] [PubMed] [Google Scholar]
  16. IBM. (2011). IBM SPSS Statistics for Windows, Version 20.0. Armonk, NY: IBM Corp. [Google Scholar]
  17. IRIS. (2012). IRIS Guidelines Update. IRIS Initiative Ltd. [Google Scholar]
  18. Iyer S, Jordan G, MacDonald K, Joober R, & Malla A (2015). Early intervention for psychosis: a Canadian perspective. Journal of Nervous and Mental Diseases, 203(5), 356–364. doi: 10.1097/NMD.0000000000000288 [DOI] [PubMed] [Google Scholar]
  19. Iyer SN, Malla A, Taksal A, Maraj A, Mohan G, Ramachandran P, … Rangaswamy T (2020). Context and contact: a comparison of patient and family engagement with early intervention services for psychosis in India and Canada. Psychological Medicine, 1–10. [DOI] [PubMed] [Google Scholar]
  20. Katsakou C, & Priebe S (2006). Outcomes of involuntary hospital admission–a review. Acta Psychiatrica Scandinavica, 114(4), 232–241. [DOI] [PubMed] [Google Scholar]
  21. Koo TK, & Li MY (2016). A guideline of selecting and reporting intraclass correlation coefficients for reliability research. Journal of Chiropractic Medicine, 15(2), 155–163. [DOI] [PMC free article] [PubMed] [Google Scholar]
  22. Malla A, Iyer SN, Rangaswamy T, Ramchandran P, Mohan G, Taksal A, … Joober R (2020). Comparison of clinical outcomes following 2 years of treatment of first-episode psychosis in urban early intervention services in Canada and India. British Journal of Psychiatry, 1–7. doi: 10.1192/bjp.2020.126 [DOI] [PubMed] [Google Scholar]
  23. McGorry PD, Killackey E, & Yung A (2008). Early intervention in psychosis: concepts, evidence and future directions. World Psychiatry, 7(3), 148. [DOI] [PMC free article] [PubMed] [Google Scholar]
  24. Ministry of Health and Long-Term Care. (2011). Early Psychosis Intervention Program Standards. Retrieved from http://www.health.gov.on.ca/english/providers/pub/mental/epi_program_standards.pdf
  25. Neale MS, & Rosenheck RA (1995). Therapeutic alliance and outcome in a VA intensive case management program. Psychiatric Services, 46(7), 719–721. [DOI] [PubMed] [Google Scholar]
  26. OECD. (2017). Recommandations to OECD ministers of health from the high level reflection group on the future of health statistics. Retrieved from https://www.oecd.org/els/health-systems/Recommendations-from-high-level-reflection-group-on-the-future-of-health-statistics.pdf
  27. Orygen. (2016). Australian Clinical Guidelines for Early Psychosis. Melbourne, Australia: Early Psychosis Writing Group, EPPIC National Support Program, Orygen. [Google Scholar]
  28. Reese RJ, Norsworthy LA, & Rowlands SR (2009). Does a continuous feedback system improve psychotherapy outcome? Psychotherapy: Theory, Research, Practice, Training, 46(4), 418–431. doi: 10.1037/a0017901 [DOI] [PubMed] [Google Scholar]
  29. Roe D, Slade M, & Jones N (2022). The utility of patient-reported outcome measures in mental health. World Psychiatry, 21(1), 56–57. doi: 10.1002/wps.20924 [DOI] [PMC free article] [PubMed] [Google Scholar]
  30. Simmons MB, Parker AG, Hetrick SE, Telford N, Bailey A, & Rickwood D (2014). Development of a satisfaction scale for young people attending youth mental health services. Early Interv Psychiatry, 8(4), 382–386. doi: 10.1111/eip.12104 [DOI] [PubMed] [Google Scholar]
  31. Taber KS (2018). The use of Cronbach’s alpha when developing and reporting research instruments in science education. Research in Science Education, 48(6), 1273–1296. [Google Scholar]
  32. Tindall RM, Simmons MB, Allott K, & Hamilton BE (2018). Essential ingredients of engagement when working alongside people after their first episode of psychosis: a qualitative meta‐synthesis. Early Intervention in Psychiatry, 12(5), 784–795. [DOI] [PubMed] [Google Scholar]
  33. Trujols J, Portella MJ, Iraurgi I, Campins MJ, Siñol N, & Cobos J. P. d. L. (2013). Patient-reported outcome measures: are they patient-generated, patient-centred or patient-valued? Journal of mental health, 22(6), 555–562. [DOI] [PubMed] [Google Scholar]
  34. Turner G, Aiyegbusi OL, Price G, Skrybant M, & Calvert M (2020). Moving beyond project-specific patient and public involvement in research. Journal of the Royal Society of Medicine, 113(1), 16–23. [DOI] [PMC free article] [PubMed] [Google Scholar]
  35. WHO. (2019). Process of translation and adaptation of instruments http://www.who.int/substance_abuse/research_tools/translation/en/.
  36. Wong HH, Abdin E, Vaingankar J, Chua YC, Yong YH, Shahwan S, … Subramaniam M (2020). Development, reliability, and validity of the case management quality of care scale (CMQS) among clients with first episode psychosis. Asian Journal of Psychiatry, 54, 102271. doi: 10.1016/j.ajp.2020.102271 [DOI] [PubMed] [Google Scholar]

Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

Supplementary_materials_Show Me You Care_1838118
NIHMS1838118-supplement-Supplementary_materials_Show_Me_You_Care_1838118.docx (64KB, docx)

Data Availability Statement

The measure reported on in this paper, Show me you care, is included as supplementary material. The Show me you care measure is free of cost for non-commercial use with the permission of and credit to its chief creator and the corresponding author of this article at srividya.iyer@mcgill.ca. Contact the author for any desired modifications/translations of the scale. The datasets generated and/or analysed during the current study are not publicly available due to ethics approval from participants not covering public sharing but are available from the corresponding author on reasonable request.

RESOURCES