Dataset Information

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

ABSTRACT: Neuromyelitis optica (NMO) is an auto-immune disease that can cause severe visual and mobility impairments. Research on health-related quality of life (HRQoL) in NMO is scarce, limiting knowledge on factors influencing HRQoL and support needs.This study provides the first qualitative exploration of HRQoL in NMO, conducted to provide a conceptual framework for the development of an NMO patient-reported outcome measure.Fifteen people with NMO (aged 18-74; 11 women, 4 men) participated in semi-structured interviews; data were analysed using constant comparative analysis.HRQoL in NMO is a multifaceted concept incorporating highly subjective perceptions of normality and meaning. Four major themes were identified: impact of physical symptoms on daily living, utilizing support to achieve independence, expectations for life and meaningful roles in life and purpose.Themes highlighted the importance of perceived normality, and its relationship to attaining life goals comparable to peers, as underpinning evaluations of HRQoL. Many people with severe disability reported a high HRQoL, suggesting the inappropriateness of assuming a negative HRQoL on the basis of an individual's neurological impairment.These findings further the conceptual understanding of HRQoL in NMO, informing patient-care approaches and the development of an NMO-specific patient-reported outcome measure.

SUBMITTER: Methley AM

PROVIDER: S-EPMC5217881 | biostudies-other | 2017 Feb

REPOSITORIES: biostudies-other

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

Methley Abigail M AM Mutch Kerry K Moore Perry P Jacob Anu A

Health expectations : an international journal of public participation in health care and health policy 20151124 1

<h4>Background</h4>Neuromyelitis optica (NMO) is an auto-immune disease that can cause severe visual and mobility impairments. Research on health-related quality of life (HRQoL) in NMO is scarce, limiting knowledge on factors influencing HRQoL and support needs.<h4>Aim</h4>This study provides the first qualitative exploration of HRQoL in NMO, conducted to provide a conceptual framework for the development of an NMO patient-reported outcome measure.<h4>Method</h4>Fifteen people with NMO (aged 18- ...[more]

PMID: 26599425

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Project description:An owner's ability to detect changes in the behavior of a dog afflicted with osteoarthritis (OA) may be a barrier to presentation, clinical diagnosis and initiation of treatment. Management of OA also relies upon an owner's ability to accurately monitor improvement following a trial period of pain relief. The changes in behavior that are associated with the onset and relief of pain from OA can be assessed to determine the dog's health-related quality of life (HRQOL). HRQOL assessments are widely used in human medicine and if developed correctly can be used in the monitoring of disease and in clinical trials. This study followed established guidelines to construct a conceptual framework of indicators of HRQOL in dogs with OA. This generated items that can be used to develop a HRQOL assessment tool specific to dogs with OA. A systematic review was conducted using Web of Science, PubMed and Scopus with search terms related to indicators of HRQOL in dogs with osteoarthritis. Eligibility and quality assessment criteria were applied. Data were extracted from eligible studies using a comprehensive data charting table. Resulting domains and items were assessed at a half-day workshop attended by experts in canine osteoarthritis and quality of life. Domains and their interactions were finalized and a visual representation of the conceptual framework was produced. A total of 1,264 unique articles were generated in the database searches and assessed for inclusion. Of these, 21 progressed to data extraction. After combining synonyms, 47 unique items were categorized across six domains. Review of the six domains by the expert panel resulted in their reduction to four: physical appearance, capability, behavior, and mood. All four categories were deemed to be influenced by pain from osteoarthritis. Capability, mood, and behavior were all hypothesized to impact on each other while physical appearance was impacted by, but did not impact upon, the other domains. The framework has potential application to inform the development of valid and reliable instruments to operationalize measurement of HRQOL in canine OA for use in general veterinary practice to guide OA management decisions and in clinical studies to evaluate treatment outcomes.

Project description:IntroductionEffective engagement of underrepresented communities in health research and policy remains a challenge due to barriers that hinder participation. Our study had two objectives: (1) identify themes of person-centred care (PCC) from perspectives of diverse patients/caregivers that would inform the development of person-centred quality indicators (PC-QIs) for evaluating the quality of PCC and initiatives to improve PCC and (2) explore innovative participatory approaches to engage ethnocultural communities in qualitative research.MethodsDrawing on participatory action research methods, we partnered with a community-based organization to train six 'Community Brokers' from the Chinese, Filipino, South Asian, Latino-Hispanic, East African and Syrian communities, who were engaged throughout the study. We also partnered with the provincial health organization to engage their Patient and Family Advisory, who represented further aspects of diversity. We conducted focus group discussions with patients/caregivers to obtain their perspectives on their values, preferences and needs regarding PCC. We identified themes through our study and engaged provincial stakeholders to prioritize these themes for informing the development of PC-QIs and codesign initiatives for improving PCC.ResultsEight focus groups were conducted with 66 diverse participants. Ethnocultural communities highlighted themes related to access and cost of care, language barriers and culture, while the Patient and Family Advisory emphasized patient and caregiver engagement. Together with provincial stakeholders, initiatives were identified to improve PCC, such as codesigning innovative models of training and evaluation of healthcare providers.ConclusionIncorporating patient and community voices requires addressing issues related to equity and understanding barriers to effective and meaningful engagement.Patient or public contributionPatient and public engagement was central to our research study. This included partnership with a community-based organization, with a broad network of ethnocultural communities, as well as the provincial health service delivery organization, who both facilitated the ongoing engagement of diverse patients/caregiver communities throughout our study including designing the study, recruiting participants, collecting and organizing data, interpreting findings and mobilizing knowledge. Drawing from participatory action research methods, patients and the public were involved in the codesign of the PC-QIs and initiatives to improve PCC in the province based on the findings from our study.

Dataset Information

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

Publications

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

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