Table 1.
Characteristics of included studies.
| Author | Study design | Population | PROM Characteristics | Barriers identified |
|---|---|---|---|---|
| Hughes et al., 2004 29 | Qualitative semi‐structured interviews | Patients (n = 3) and nurses (n = 13) in UK palliative care setting |
‐ Paper‐based PROMs: 6‐month experience ‐ PROMs (10 items): POS (physical, psychological and spiritual domains of life) |
‐ Time constraints ‐ Staff busy work loads ‐ Some PROM issues identified could not be clinically addressed ‐ HP reluctance to recruit patients (e.g. patient distressed/unwell, need for informed consent, HP lack of confidence/competence) ‐ Intrusion on patient personal space |
| Basch et al., 2005 30 | Quantitative cross‐sectional survey | Patients (n = 74) undergoing chemotherapy for gynaecological cancer in US cancer centre |
Web‐based (STAR) PROM collection: 6 months experience ‐ PROMs (13 items): adapted CTCAE, adapted ECOG performance status assessment, EQ‐5D |
‐ Technical difficulties completing PROMs ‐ Patient inconvenience ‐ Liability issues |
| Kanatas et al., 2009 31 | Quantitative cross‐sectional survey | Members of British Association of Head and Neck Oncologists (n = 106) |
‐ Unspecified mode of collection. ‐ PROMs: HRQOL questionaries including EORTC, FACT, UW‐QOL |
‐ Time constraints ‐ HP difficulty analysing PROM data ‐ HP forgetfulness to distribute PROMs ‐ HP perceived lack of value added to patient clinical management ‐ Patient compliance ‐ Lack of resources for PROM collection |
| Snyder et al., 2010 32 | Qualitative semi‐structured telephone interviews | Breast and prostate cancer patients (n = 41) and doctors (n = 15) in US cancer centre | Nil (pre‐PROM implementation interviews) |
‐ Time constraints ‐ Patient perceived irrelevance of certain PROM questionnaires ‐ Patient perception that PROMs may hinder the HP–patient relationship ‐ Burden upon patients to complete PROMs |
| Daveson et al., 2012 33 | Quantitative cross‐sectional survey | HPs (n = 392); doctors (n = 196); nurses (n = 104) in palliative care in Europe and Africa | Unspecified |
‐ Time constraints ‐ Lack of training on PROM tools |
| Snyder et al., 2013 34 | Qualitative cross‐sectional interviews and quantitative surveys | HPs (n = 11), breast and prostate patients (n = 47) in US cancer centre. |
‐ Web‐based (PatientViewpoint) PROM collection; feasibility phase ‐ PROM: all patients (physical, function, pain interference, social role satisfaction, fatigue, anxiety, depression), breast patients (EORTC BR23), prostate patients (EPIC short form) |
‐ PROMs identified issues already known to HPs ‐ Patient perception that intervention may be impersonal ‐ Patient perception that HPs’ may not review PROM data ‐ Patient technical difficulties ‐ System technical issues (email notification issues, results not synchronising with EMR) ‐ Time constraints ‐ Patients sick/unwell |
| Judson et la., 2013 35 | Qualitative patient self‐reports | Patients (n = 286) undergoing chemotherapy at US cancer centre |
‐ Web‐based (STAR) PROMs: 12‐month experience ‐ PROMs: EuroQoL EQ‐5D, CTCAE (pain, fatigue, nausea, vomiting, constipation, diarrhoea, appetite loss), performance status |
‐ Patient forgetfulness ‐ Patient too busy/did not feel like reporting ‐ Patient sick/unwell |
| Hubbard et al., 2014 18 | Quantitative and qualitative cross‐sectional survey | HPs (n = 44): oncologists, oncology fellow, physician assistant, nurse in solid tumour oncology practice in the US |
‐ Paper‐based PROM; 18‐month experience ‐ PROM (n = 3); pain, fatigue and overall QOL measured on a 0‐10 scale |
‐ Unclear clinical pathways for actioning PROMs |
| Schepers et al., 2016 26 | Quantitative cross‐sectional survey |
Paediatric HPs (n = 352): 52 countries worldwide |
Unspecified |
‐ Time constraints ‐ Insufficient staff to address issues ‐ Logistical problems ‐ Lack of financial resources ‐ PROMs not fitting into clinical workflows |
| Trautmann et al., 2016 10 | Qualitative non‐directed, narrative group interviews | HPs (3 nurses, 2 physicians) in a German cancer centre. |
‐ Electronic PROMs; 6‐month experience ‐ PROM (79 items): EORTC QLQ‐C30, Distress Thermometer, HSI, Short‐Form MNA, BPI, Karnofsky index, Control Preference Scale |
‐ Time for patients to complete PROMs pre‐consultation ‐ PROMs irrelevant to patient situation ‐ Lack of PROM response options ‐ HP lack of knowledge on PROM data |
| Baeksted et al., 2017 27 | Qualitative semi‐structured interviews | Oncologists (n = 5) and castration‐resistant metastatic prostate cancer patients (n = 4) in a Danish hospital |
‐ Electronic PROMs (AmbuFlex); 3‐month experience ‐ PROMs (41 items): PRO‐CTCAE |
‐ Patient late arrival to clinic; no time to answer PROMs ‐ Patient difficulty using PRO collection system ‐ Patient too ill to complete PROMs ‐ HP lack of knowledge on content/aim of PRO collection system ‐ HP lack of knowledge on PRO use ‐ HP inconvenience logging into another system ‐ Lack of pictures and graphs of patient symptoms. ‐ Lack of guidelines on PRO use ‐ Patient mis‐estimation of their symptom severity |
| Girgis et al., 2017 14 | Qualitative cross‐sectional survey, cognitive interviews and evaluation interviews | Oncology HPs (evaluation interviews n = 5) and patients (cognitive interview n = 10, survey n = 28, evaluation interviews n = 14) in an Australian hospital |
‐ Electronic PROMs (PROMPT‐Care); 3‐month experience ‐ PROMs (67 items): Distress Thermometer, Edmonton Symptom Assessment Scale, SCNS‐ST9 |
‐ Patient difficulty recalling their symptoms ‐ Lack of opportunity for patients to discuss PRO data with HPs ‐ Patient responses not directly related to their cancer care ‐ Unresolvable identified issues regardless of information/support provided ‐ Inability for staff to review and address all issues in a single clinical consult. ‐ Increase clinical workloads and consultation times ‐ PROMs highlighted issues already known to the clinical team ‐ HP difficulty navigating through PRO collection system. |
| Duman‐Lubberding et al., 2017 12 | Qualitative semi‐structured interviews | Surgeons (n = 6) and HNC patients who no longer, or have never, participated in PRO collection (n = 71) |
‐ Electronic PROMs (OncoQuest); 5‐year experience ‐ PROMs (79 items) ‐ EORTC QLQ‐C30 and QLQ‐H&N35 questionnaires, HADS |
‐ Inadequate explanations to patients on PROs and PROMs ‐ Lack of feedback from HPs to patients on PRO data ‐ Time for patients to complete PROMs ‐ Value of PRO collection unclear to patients ‐ Delayed referrals to supportive care ‐ Identification of unsolvable problems |
| Wang et al., 2018 28 | Quantitative surveys and qualitative assessments | Chemotherapy patients (n = unknown) in cancer centre in US. |
‐ Electronic PROMs ‐ PROMs (32 items): Three‐level version of the EQ‐5D‐3L PRO‐CTCAE |
‐ Inconvenience and time to complete PROMs ‐ Patient too unwell to complete PROMs |
PROM, patient‐reported outcome measures; HP, health professionals; POS, Palliative care Outcome Scale; CTCAE, Common Terminology Criteria for Adverse Events; ECOG, Eastern Cooperative Oncology Group; EQ‐5D, EuroQol‐5D; HRQOL, Health‐Related Quality of Life Questionnaires; EORTC, European Organisation for Research and Treatment of Cancer; FACT, Functional Assessment of Cancer Therapy; UW‐QOL, University of Washington Quality of Life Questionnaire; EPIC, Expanded Prostate Cancer Index Composite; STAR, Symptom Tracking and Reporting; QOL, quality of life; QLQ‐C30, Quality of Life Questionnaire‐Core 30; HSI, Hornheider Screening Instrument; MNA, Mini Nutritional Assessment; BPI, Brief Pain Inventory; PRO, patient‐reported outcome; PROMPT‐Care, Patient‐Reported Outcome Measures for Personalised Treatment and Care; SCNS‐ST9, Supportive Care Needs Surveying‐Screening Tool 9; HADS, Hospital Anxiety and Depression Scale