Development of a patient‐centred conceptual framework of health‐related quality of life in neuromyelitis optica: a qualitative study

Methley, Abigail; Mutch, Kerry; Moore, Pascale; Jacob, Anu

doi:10.1111/hex.12432

Cited by 17 publications

(14 citation statements)

References 44 publications

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“…Results of the current study emphasize the significant negative impact NMOSD can have on patient QoL, particularly in relation to physical disability, pain, bowel and bladder dysfunction, or visual impairment. [42][43][44][45][46] These manifestations correspond to reduced ability to work at a job or perform daily activities, and a decreased QoL, which also reconcile with negative impacts of anxiety, disability, or depression in NMOSD. 25,47 Factors contributing to these adverse outcomes may include (1) delayed or inappropriate treatment due to initial misdiagnosis; (2) real or perceived efficacy or lack of efficacy of current treatment options; (3) lack of a standard definition of relapse; and (4) disease-specific economic burden.…”

Section: Discussionmentioning

confidence: 99%

Neuromyelitis optica spectrum disorder

Beekman

Keisler

Pedraza

et al. 2019

Neurol Neuroimmunol Neuroinflamm

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ObjectiveTo gain insights into NMOSD disease impact, which may negatively affect QoL of patients, their families, and social network.MethodsThe current study used validated instruments to assess physical, emotional, and socioeconomic burden of NMOSD on QoL among 193 patients.ResultsA majority of patients reported an initial diagnosis of a disease other than NMOSD. Overall, two-thirds of patients reported NMOSD as having a strong negative impact on physical health (Short Form-36 [SF-36] score 27.1 ± 39.1), whereas emotional well-being was relatively unimpaired on average (SF-36 score 54.0 ± 44.9). A subset of patients reported having the highest category of emotional health despite worse physical health or financial burden, suggesting psychological resilience. Pain (r = 0.61) and bowel/bladder dysfunction (r = 0.41) imposed the greatest negative physical impact on overall QoL. In turn, ability to work correlated inversely with worsened health (r = −0.68). Increased pain, reduced sexual function, inability to work, and reduced QoL had greatest negative impacts on emotional well-being. Dissatisfaction with treatment options and economic burden correlated inversely with QoL.ConclusionsCollectively, the current findings advance the understanding of physical, emotional, social, and financial tolls imposed by NMOSD. These insights offer potential ways to enhance QoL by managing pain, enhancing family and social networks, and facilitating active employment.

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Section: Discussionmentioning

confidence: 99%

Neuromyelitis optica spectrum disorder

Beekman

Keisler

Pedraza

et al. 2019

Neurol Neuroimmunol Neuroinflamm

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“…Item generation was guided by a conceptual framework 10 and clinical experts with particular attention given to the wording used by patients. Cognitive interviews conducted with patients using the draft measure evaluated whether the items comprehensively evaluated the lived experience of individuals with NMO.…”

Section: Discussionmentioning

confidence: 99%

“…Expert review was conducted using a panel of subject matter experts to identify items of relevance to NMO, and these were considered alongside previous qualitative research on the lived experience of NMO 22 and a conceptual framework of quality of life in NMO. 10 Consideration by our expert panel resulted in an initial consensus view of 106 items that were considered to be of possible relevance.…”

Section: Methodsmentioning

confidence: 99%

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Patient-reported outcome measure for neuromyelitis optica: pretesting of preliminary instrument and protocol for further development in accordance with international guidelines

et al. 2016

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ObjectiveThis study outlines the development of a patient-reported outcome measure (PROM), an instrument to obtain self-reported health status for neuromyeltis optica (NMO), a disabling neurological condition.DesignDevelopment was conducted in accordance with international guidance for PROMs including systematic review of existing literature, item generation guided by qualitative interviews, health-related quality of life conceptual framework and clinical expert panel and cognitive interviews with NMO patients.SettingParticipants were identified through a national NMO clinic in a tertiary NHS neurosciences service.Participants15 individuals with NMO participated in cognitive interviews requiring review and ranking of proposed PROM items and qualitative feedback on content, layout and response options.ResultsParticipants endorsed the draft instrument as reflecting their experience of the condition and as being easy to understand. Rating and ranking of item relevance and importance reduced the draft instrument from 106 to 48 items. Participant feedback on overlapping items eliminated a further 2 items and resulted in a preliminary instrument of 46 items. As a direct result of participant feedback ordering of the 10 domains was revised, a 4 option Likert scale was employed and a 4-week recall period for impact of symptoms was selected.ConclusionsA 46-item instrument developed in accordance with international PROM development guidelines through literature review, developed by subject matter experts and refined through pretesting examining content validity provides a preliminary measure for assessing patient-report of health status in NMO. Further evaluation is proposed including sensitivity to clinical change, and international contributions to evaluating the measure are encouraged.

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“…This process involved developing a topic guide for focus groups, conducting focus groups, constructing a draft measure based on focus group analysis and having an expert panel review the measure. Similar to other studies, this study focused on the initial stages of questionnaire development rather than on the psychometric evaluation of the measure . This methodology permits greater transparency in reporting how people accessing AOD services were involved and thus ensures that these people have a voice in the development of the measure.…”

Section: Methodsmentioning

confidence: 99%

Experiences of patient‐centred care in alcohol and other drug treatment settings: A qualitative study to inform design of a patient‐reported experience measure

Hinsley

Kelly

Davis

2019

Drug and Alcohol Review

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Introduction and Aims A growing body of literature supports the use of patient‐reported experience measures (PREMs) to monitor the provision of patient‐centred care to people accessing health services. However, there is an absence of research into PREMs in the alcohol and other drugs (AOD) field. The aim of this study was to explore patient experiences of AOD care and to develop a PREM for AOD treatment settings. Design and Methods Five focus groups were conducted with people accessing AOD treatment services in New South Wales, Australia (N = 39). Data were analysed using iterative categorisation. A draft PREM was developed based on focus group findings and was modified following a subsequent review by consumers and service providers. Results Participants emphasised the importance of timely access to integrated care delivered in a structured program by staff members who genuinely care. Furthermore, participants described positive experiences when services addressed the problems that maintain addiction, held them responsible for themselves and facilitated self‐reflection. The PREM for Addiction Treatment (PREMAT) is a 33‐item measure that captures what participants said regarding their experience of patient‐centred care in AOD treatment. Discussion and Conclusions The experiences of people accessing AOD treatment provided useful feedback that can be translated into service improvements and that informed the design of a PREM for AOD treatment settings. Future research is necessary to further investigate the validity of the PREMAT.

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Development of a patient‐centred conceptual framework of health‐related quality of life in neuromyelitis optica: a qualitative study

Cited by 17 publications

References 44 publications

Neuromyelitis optica spectrum disorder

Neuromyelitis optica spectrum disorder

Patient-reported outcome measure for neuromyelitis optica: pretesting of preliminary instrument and protocol for further development in accordance with international guidelines

Experiences of patient‐centred care in alcohol and other drug treatment settings: A qualitative study to inform design of a patient‐reported experience measure

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