key: cord-0774868-s9x88bca authors: Gorgon, Edward; Maka, Katherine; Kam, Andrew; Nisbet, Gillian; Sullivan, Justin; Regan, Gerard; Pourkazemi, Fereshteh; Lin, Jianhua; Mohamed, Mahmoud; Leaver, Andrew title: Needs assessment for health service design for people with back pain in a hospital setting: A qualitative study date: 2022-02-11 journal: Health Expect DOI: 10.1111/hex.13419 sha: c59266b285d0e456f1f099782bf397606b04df0b doc_id: 774868 cord_uid: s9x88bca BACKGROUND: There is a need for effective health service solutions to provide greater structure and support for implementing evidence‐based practice in back pain care. Patient involvement in developing these solutions is crucial to increase relevance, acceptability and uptake. OBJECTIVES: To determine patients' perceived needs and barriers to best‐practice back pain care, and potential solutions to better address care needs. The study is the third in a series of needs assessment studies feeding into the ‘idea generation’ for service design in a large teaching hospital in a culturally and linguistically diverse community in metropolitan Sydney, Australia. DESIGN: We conducted a combination of focus groups and in‐depth interviews using an interpretive description approach. We used inductive thematic analysis to identify the main themes. SETTING AND PARTICIPANTS: We purposively sampled patients with diverse characteristics from the neurosurgery and physiotherapy outpatient clinics, in particular those whose primary language was English, Arabic, Persian or Mandarin. Non‐English audio recordings were translated and transcribed by bilingual researchers. RESULTS: There were 24 participants (focus groups = 9; individual interviews = 15) when data saturation was reached. The analysis identified three key themes with several subthemes around what service designers needed to understand in helping people with back pain in this setting: (1) This is who I am; (2) It's not working for me; and (3) What I think I need. DISCUSSION AND CONCLUSION: This study highlights that perceived unmet needs of patients are underpinned by unhelpful beliefs about the causes of and solutions for back pain, misaligned care expectations, unclear expectations of the hospital role and fragmentations in the health system. To design and implement a service that can deliver better back pain care, several solutions need to be integrated around: developing new resources that challenge unhelpful beliefs and set realistic expectations; improving access to education and self‐management resources; focusing on individualized care; using a collaborative multidisciplinary approach within the hospital; and better connecting with and directing primary health care services. PATIENT OR PUBLIC CONTRIBUTION: A consumer representative of the Western Sydney Local Health District provided input during study conceptualisation and is duly recognized in the Acknowledgements section. people with back pain in this setting: (1) This is who I am; (2) It's not working for me; and (3) What I think I need. Discussion and Conclusion: This study highlights that perceived unmet needs of patients are underpinned by unhelpful beliefs about the causes of and solutions for back pain, misaligned care expectations, unclear expectations of the hospital role and fragmentations in the health system. To design and implement a service that can deliver better back pain care, several solutions need to be integrated around: developing new resources that challenge unhelpful beliefs and set realistic expectations; improving access to education and self-management resources; focusing on individualized care; using a collaborative multidisciplinary approach within the hospital; and better connecting with and directing primary health care services. Local Health District provided input during study conceptualisation and is duly recognized in the Acknowledgements section. assessment of healthcare needs, codesign, health services research, low-back pain, neck pain, patient-centred care Integrating best practice recommendations for back pain into routine care is challenging given most current health systems are not particularly organized to support these recommendations. 1 Best practice guidelines typically recommend what changes are necessary, emphasizing tailoring care to patient context and preferences and prioritizing nonpharmacological management. 2, 3 These changes reflect a reconceptualisation of back pain away from a traditional biomedical model, requiring a shift in perspective and behaviour from patients and clinicians. However, these recommendations have failed to resonate in clinical practice, [4] [5] [6] [7] with guidelines often criticized for not being user-friendly 8 and for lacking applicability and implementation guidance. 9, 10 Suboptimal and delayed uptake of evidence-based practice has important ramifications, as back pain is the leading cause of disability worldwide. 6, 11, 12 Therefore, there is a need to develop effective health system-or health service-level solutions to support the translation of best practices into routine care. One potential solution is the design of new clinical pathways for back pain. 1, 6, 7, 13 Recent studies have shown the value of clinical pathways for back pain for integrating guideline recommendations, streamlining care processes across multiple disciplines and supporting shared decision-making. 13, 14 However, all except one 14 of these alternative pathways were created for European and North American healthcare contexts. This is important because implementation outcomes vary across settings and jurisdictions, and are therefore context-dependent. 15, 16 For example, a primary care model based on prognostic stratification of back pain (STarT Back) demonstrated positive outcomes in the United Kingdom, 17,18 but did not improve healthcare utilisation and patient outcomes in the United States. [19] [20] [21] Adaptation to the local context is therefore crucial to implementation success. Matching healthcare solutions to context is linked to patient factors, 15 meaning, patient needs and preferences should be considered in the design. Scoping reviews of qualitative studies have reported recurring themes of patients' perceptions of unmet needs and expectations regarding back pain care; [22] [23] [24] [25] however, few studies were set in Australia, which is the local context for the present study. Most of these studies were conducted 10 or more years ago and may not reflect current needs. [22] [23] [24] Patients' perception of unmet healthcare needs remains an important problem leading to increased use of healthcare 26 and rising costs. 27 Patient involvement in the development of healthcare solutions is considered crucial in promoting relevance, acceptability and uptake, [28] [29] [30] and therefore warranted throughout the design process. We are currently designing multidisciplinary care for back pain that is fit-for-context in a large teaching hospital setting to meet the needs of a diverse community in Sydney, Australia. The hospital provides high-quality specialized healthcare for patients with back pain, including physiotherapy, neurosurgery, rheumatology, orthopaedics and chronic pain management. Further, it provides clinical education for future healthcare workers and is a research centre that promotes clinical-academic partnerships. The service design is guided by the Sax Institute translational research framework. 31 This study is the third in a series of needs assessment studies within the framework's 'idea generation' 31 and marks the start of patient involvement in a codesign process. 32 It provides a qualitative examination of current care to complement our quantitative evaluations of service delivery. Our earlier needs assessment studies demonstrated important issues in back pain service delivery. 33, 34 The majority of referrals to the neurosurgery clinic did not require surgical treatment and would be better directed to conservative management. 33 There were signs of poor engagement by patients with conservative management, with a 39% drop-out and noncompletion rate for physiotherapy programmes. 34 In contrast, the small proportion of patients who required surgery were appropriately managed, in concordance with practice guidelines. 33 Patients referred to physiotherapy received guidelinebased, active interventions (98%), 34 in contrast to other settings and jurisdictions. 4, 5 These findings further highlight the importance of contextualisation. The hospital serves a culturally and linguistically diverse (CALD) community with areas of low socioeconomic status and health literacy. 35 Therefore, patient involvement in the service development process requires due consideration of this community diversity. The overall aim of the study was to explore the perspectives of patients referred for clinical services for back pain in a teaching hospital setting. The specific objectives were to: (1) determine patients' perceived needs and barriers to implementing best practice care; and (2) identify potential solutions that can be applied in service design. This qualitative study used an interpretive description approach 36, 37 to understand reality through the lens of people in their lived situations. 38 The study was conducted at the neurosurgery and physiotherapy outpatient clinics of a large publicly funded teaching hospital in metropolitan Sydney, Australia. These services receive a combined total of approximately 1000 new referrals for back pain annually. The neurosurgery clinic is a funded weekly 4-h service where three to four neurosurgeons and neurosurgery registrars review up to 30 new and follow-up patients. The physiotherapy clinic has seven full-time equivalent positions covered by 14 physiotherapists. Patients referred to these clinics typically are middle-aged and older persons, have chronic back pain and are from CALD and socioeconomically diverse backgrounds, 33, 34 reflecting population ageing and diversity in Greater Western Sydney. 35 Adults with back pain (>18 years of age) were purposively sampled observing maximum variation 40 to explore the range of patients' care needs and common patterns cutting across such needs. Patients from diverse backgrounds were sought, particularly those whose primary language was one of the most prevalent in the community (English, Arabic, Persian or Mandarin). 41 Previous studies have mostly reflected the perspectives of patients from English-speaking backgrounds. 22, 24 Patients were included if they were: (1) on the clinic waitlists; (2) attending outpatient sessions at the time (i.e., physiotherapy); or (3) formally discharged or had discontinued an episode of care. All participants provided written informed consent. A combination of focus groups and individual interviews was used. 42 Data were initially gathered through three face-to-face focus groups prefaced with an explanation that responses would be specifically used to understand how to best help people with back pain and improve service delivery at the hospital. A prototype version of the questions was piloted with five volunteer patients who attended back exercise classes at the physiotherapy department but were not part of the study. Wording of some questions was updated to improve clarity and concreteness. The guide questions were used as starting points and interviewers used additional questions to follow the participants' lead. Following the three focus groups, more targeted questions were developed and incorporated into the succeeding individual interviews. M., Arabic; F. P., Persian). Peer debriefing with another member of the research team was conducted after each focus group and individual interview to capture participants' key messages and researchers' preliminary data interpretations. Reflexivity was observed using field notes. The researchers applied thematic analysis using an inductive iterative approach. 43, 44 Four research team members (E. G., G. N., J. S., A. L.) independently reviewed the first three transcripts, which were from the focus groups. Initial codes were identified from descriptive phrases or statements (i.e., units of meaning). Individual coding by the researchers was compared, discussed and recoded over a series of meetings to create a coding framework. Individual interviews were conducted with additional probing questions included based on the analysis of the focus group data. The subsequent transcripts were analysed using the coding framework, with codes iteratively reviewed and updated. Data collection was completed when the addition of new data from the last two interviews was managed by the coding framework without requiring further modification. 45 The first author (E. G.) led the analysis of the interview transcripts with three senior authors (G. N., J. S., A. L.) providing independent reviews and challenging the assumptions that underpinned the interpretations. Disagreements were discussed and resolved through group consensus. Codes were categorized to generate themes and subthemes, which were iteratively reviewed, defined and named. Vivid and compelling quotations supporting the themes were identified and extracted. The transcripts and analyses were not member-checked; however, patients were sent a synthesis of the findings as part of subsequent steps to develop service design solutions. All decisions made by the researchers were documented in an audit trail. NVivo 12 software (QSR International Pty Ltd.) was used to organize qualitative data during thematic analysis, while demographic data were analysed descriptively using IBM SPSS Statistics for Windows, Version 25.0 (IBM Corp). There were 24 study participants when data collection was completed. None of the participants dropped out or withdrew from the study. Table 1 Participants also believed that cost of care was a barrier to receiving the right kind of help and that they might have been helped more by privately funded services, which were outside of their financial reach. There is a need to make patient-centred care more evident and therefore recognized by patients. Many participants perceived the health system to be fragmented, suggesting a need for improved coordination between the hospital and community, and a collaborative multidisciplinary team approach within the hospital. There were also diverse expectations about the role of the hospital in looking after back pain, with many turning to the hospital for primary healthcare services, which they are unable to afford in the community. There is clearly a role for specialized surgical and medical treatments where appropriate; however, patients who need these are the minority. 33, 34 There is a need to promote greater awareness amongst primary healthcare providers on initiating timely, adequate conservative treatment and seeking pain management to assist effective coping amongst patients. The participants were reflective of the back pain cases referred to the hospital, 33,34 most of which were complex and chronic and often required long-term solutions and multimodal management in the community. 70 There is a need to visualize the ideal hospital service and the changes that can be implemented realistically under the existing policies and health service structure and resources. These changes need to be informed by insights from this study and accepted by patient stakeholders through a codesign process involving iterative consensus building. 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Conceptions of patients with low back pain about their encounters in the health care system Overview of self-determination theory: an organismic dialectical perspective Selfdetermination theory applied to health contexts: a meta-analysis The therapeutic alliance between clinicians and patients predicts outcome in chronic low back pain Shared decision making should be an integral part of physiotherapy practice Characteristics of therapeutic alliance in musculoskeletal physiotherapy and occupational therapy practice: a scoping review of the literature The Lancet. Rethinking chronic pain The authors would like to express our great appreciation for all the participants who provided their patient voice in the study.The authors thank Aila-Nica Bandong and consumer representative Lisa Keast-Jones for sharing their ideas during study