Developing a patient-reported experience questionnaire with and for people who use drugs: A community engagement process in Vancouver’s Downtown Eastside

Olding, Michelle; Hayashi, Kanna; Pearce, Lindsay A; Bingham, Brittany; Buchholz, Michelle; Gregg, Delilah; Hamm, Dave; Shaver, Laura; McKendry, Rachael; Barrios, Rolando; Nosyk, Bohdan

doi:10.1016/j.drugpo.2018.06.003

Cited by 16 publications

(30 citation statements)

References 31 publications

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“…In this regard, examining and improving the attachment to primary care (defined as having a regular family doctor or clinic and feeling comfortable going there) may constitute an important first step to addressing the unmet healthcare needs among this population. While this point has also been raised by local PWUD communities in the DTES as an important area of research, 25 to our knowledge, no study has assessed levels of attachment to primary care among PWUD or its association with unmet healthcare needs. The present study provides a unique opportunity to assess both the unmet healthcare needs and attachment of primary care among PWUD in Vancouver, a setting where publicly-funded interdisciplinary primary care clinics have recently been implemented.…”

Section: Introductionmentioning

confidence: 98%

High Prevalence of Unmet Healthcare Need among People who use Illicit Drugs in a Canadian Setting with Publicly-Funded Interdisciplinary Primary Care Clinics

et al. 2021

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Background People who use illicit drugs (PWUD) experience significant barriers to healthcare. However, little is known about levels of attachment to primary care (defined as having a regular family doctor or clinic they feel comfortable with) and its association with unmet healthcare needs in this population. In a Canadian setting that features novel publicly-funded interdisciplinary primary care clinics, we sought to examine the prevalence and correlates (including attachment to primary care) of unmet healthcare needs among PWUD. Methods Data were derived from two prospective cohort studies of PWUD in Vancouver, Canada between December 2017 and November 2018. Multivariable logistic regression was used to identify factors associated with self-reported unmet healthcare needs among participants reporting any health issues. Results In total, 743 (83.6%) of 889 eligible participants reported attachment to primary care and 220 (24.7%) reported an unmet healthcare need. In multivariable analyses, attachment to primary care at an integrated care clinic (adjusted odds ratio [AOR] = 0.14; 95% Confidence Interval [CI]: 0.06–0.34) was negatively associated with an unmet healthcare need, while being treated poorly at a healthcare facility (AOR = 5.50; 95% CI: 3.59–8.60) and self-reported chronic pain (AOR = 2.00, 95% CI: 1.30–3.01) were positively associated with an unmet healthcare need. Conclusion Despite the high level of attachment to primary care, a quarter of our sample reported an unmet healthcare need. Our findings suggest that multi-level interventions are required to address the unmet need, including pain management and integrated care, to support PWUD with complex health needs.

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Section: Introductionmentioning

confidence: 98%

High Prevalence of Unmet Healthcare Need among People who use Illicit Drugs in a Canadian Setting with Publicly-Funded Interdisciplinary Primary Care Clinics

et al. 2021

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“…Health care systems seeking to respond to the significant morbidity and acute care use among PWUD may benefit from incorporating primary care-based models [ 39 , 40 ] that emphasize improved coordination and integration of opioid substitution therapy with other medical, mental health, and substance use care [ 44 , 45 ]. Such integration will require a commitment to overcome structural and philosophical barriers [ 46 – 48 ], with a focus on collaborative care that involves information continuity among providers, provider education, case management, and inclusion of the patient perspective [ 47 , 49 ].…”

Section: Discussionmentioning

confidence: 99%

Engagement in primary health care among marginalized people who use drugs in Ottawa, Canada

Kendall

Boucher

Donelle

et al. 2020

BMC Health Serv Res

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Background There may be less primary health care engagement among people who use drugs (PWUD) than among the general population, even though the former have greater comorbidity and more frequent use of emergency department care. We investigated factors associated with primary care engagement among PWUD. Methods The Participatory Research in Ottawa: Understanding Drugs (PROUD) cohort study meaningfully engaged and trained people with lived experience to recruit and survey marginalized PWUD between March–December 2013. We linked this survey data to provincial-level administrative databases held at ICES. We categorized engagement in primary care over the 2 years prior to survey completion as: not engaged (< 3 outpatient visits to the same family physician) versus engaged in care (3+ visits to the same family physician). We used multivariable logistic regression to determine factors associated with engagement in primary care. Results Characteristics of 663 participants included a median age of 43 years, 76% men, and 67% living in the two lowest income quintile neighborhoods. Despite high comorbidity and a median of 4 (interquartile range 0–10) primary care visits in the year prior to survey completion, only 372 (56.1%) were engaged in primary care. Engagement was most strongly associated with the following factors: receiving provincial benefits, including disability payments (adjusted odds ratio [AOR] 4.14 (95% confidence interval [CI] 2.30 to 7.43)) or income assistance (AOR 3.69 (95% CI 2.00 to 6.81)), having ever taken methadone (AOR 3.82 (95% CI 2.28 to 6.41)), mental health comorbidity (AOR 3.43 (95% CI 2.19 to 5.38)), and having stable housing (AOR 2.09 (95% CI 1.29 to 3.38)). Conclusions Despite high comorbidity, engagement in primary care among PWUD was low. Our findings suggest that social care (housing, disability, and income support) and mental health care are associated with improved primary care continuity; integration of these care systems with primary care and opioid substitution therapy may lessen the significant morbidity and acute care use among PWUD.

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“…PROMs and PREMs for adult service users of SUD treatment are available and are useful for assessing whether they view their recent SUD treatment episode as effective and satisfactory [11,[24][25][26][27][28][29]. Despite growing international interest in the development and implementation of patient-reported measures within the context of SUD treatment and related services [24][25][26][27][28][29], these measures have been developed with adult populations and the extent to which they require adaptation to ensure relevance and appropriateness for adolescent service users is not yet known. To address this gap, we explored the SUD treatment outcomes and experiences that South African adolescent service users think should be assessed and their views on how these measures should be administered.…”

Section: Discussionmentioning

confidence: 99%

“…Adolescent service users identified several additional issues, not currently captured by adult PROMs (e.g. ), that they considered critical for the attainment of their SUD treatment goals and thought should be incorporated into an adolescent version of the SAATSA. Principal among these were questions on whether treatment had: (i) enhanced their motivation for changing substance use behaviour; (ii) taught them strategies for coping with stressors and regulating negative emotions which often led to substance use; (iii) helped them engage with recreational alternatives to drug use in order to alleviate some of the common environmental barriers to maintaining SUD treatment gains (such as boredom and negative peer influences); and (iv) helped them identify and build social networks to support sustained behaviour change.…”

Section: Discussionmentioning

confidence: 99%

South African service users’ perceptions of patient‐reported outcome and experience measures for adolescent substance use treatment: A qualitative study

Myers

Johnson

Lucas

et al. 2019

Drug and Alcohol Review

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Introduction and Aims Patient‐reported outcome measures (PROM) and experience measures (PREM) for substance use disorder (SUD) treatment exist for adults but have unknown relevance for adolescents. This study aimed to explore adolescents' perceptions of effective SUD treatment and possible barriers to completing PROMs and PREMs to guide efforts to adapt the South African Addiction Treatment Services Assessment (SAATSA) for adolescents. Design and Methods Five focus groups were conducted with 38 adolescent service users recruited from residential and outpatient SUD treatment facilities in South Africa. Group discussions explored perceptions of treatment components necessary for desired SUD treatment outcomes, treatment experiences that support engagement in care, and perceptions of PROM and PREM completion. Results Participants viewed treatment elements that enhance motivation for change, coping and emotional regulation; provide recreational alternatives to substance use; and improve family relationships and home environments as critical to positive treatment outcomes. They reflected that provider characteristics and developmentally and culturally appropriate services facilitated engagement in treatment. PROM and PREM completion seemed acceptable, with participants suggesting ways to enhance their appeal. Discussion and Conclusion Findings confirm that adult‐oriented PROMs and PREMs require adaptation for adolescents. Service user inputs identified ways to expand the content of the SAATSA to better reflect adolescents' treatment priorities. These inputs have also guided changes to item formulation and administration procedures to enhance the SAATSA's acceptability for adolescents. Ensuring the SAATSA addresses treatment outcomes and experiences that matter to adolescents is vital for generating information to guide improvements to adolescent SUD services.

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Developing a patient-reported experience questionnaire with and for people who use drugs: A community engagement process in Vancouver’s Downtown Eastside

Cited by 16 publications

References 31 publications

High Prevalence of Unmet Healthcare Need among People who use Illicit Drugs in a Canadian Setting with Publicly-Funded Interdisciplinary Primary Care Clinics

High Prevalence of Unmet Healthcare Need among People who use Illicit Drugs in a Canadian Setting with Publicly-Funded Interdisciplinary Primary Care Clinics

Engagement in primary health care among marginalized people who use drugs in Ottawa, Canada

South African service users’ perceptions of patient‐reported outcome and experience measures for adolescent substance use treatment: A qualitative study

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