Incorporating the patient's perspective in outcomes research

Hsiao, Betty; Fraenkel, Liana

doi:10.1097/bor.0000000000000372

Cited by 23 publications

(19 citation statements)

References 42 publications

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“…Outcomes research is increasingly incorporating the patient’s perspective in the study design and development of outcome measures [ 26 - 29 ]. This is thought to improve the credibility of research results and can be considered an ethical imperative [ 30 ].…”

Section: Discussionmentioning

confidence: 99%

Methicillin-Resistant Staphylococcus aureus Eradication and Decolonization in Children Study (Part 2): Patient- and Parent-Centered Outcomes of Decolonization

et al. 2020

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Background Skin and soft tissue infections (SSTIs) due to community-acquired methicillin-resistant Staphylococcus aureus (MRSA) can lead to a number of significant known medical outcomes including hospitalization, surgical procedures such as incision and drainage (I&D), and the need for decolonization procedures to remove the bacteria from the skin and nose and prevent recurrent infection. Little research has been done to understand patient and caregiver-centered outcomes associated with the successful treatment of MRSA infection. Objective This study aimed to uncover MRSA decolonization outcomes that are important to patients and their parents in order to create a set of prototype measures for use in the MRSA Eradication and Decolonization in Children (MEDiC) study. Methods A 4-hour, human-centered design (HCD) workshop was held with 5 adolescents (aged 10-18 years) who had experienced an I&D procedure and 11 parents of children who had experienced an I&D procedure. The workshop explored the patient and family experience with skin infection to uncover patient-centered outcomes of MRSA treatment. The research team analyzed the audio and artifacts created during the workshop and coded for thematic similarity. The final themes represent patient-centered outcome domains to be measured in the MEDiC comparative effectiveness trial. Results The workshop identified 9 outcomes of importance to patients and their parents: fewer MRSA outbreaks, improved emotional health, improved self-perception, decreased social stigma, increased amount of free time, increased control over free time, fewer days of school or work missed, decreased physical pain and discomfort, and decreased financial burden. Conclusions This study represents an innovative HCD approach to engaging patients and families with lived experience with MRSA SSTIs in the study design and trial development to determine meaningful patient-centered outcomes. We were able to identify 9 major recurrent themes. These themes were used to develop the primary and secondary outcome measures for MEDiC, a prospectively enrolling comparative effectiveness trial. Trial Registration ClinicalTrials.gov NCT02127658; https://clinicaltrials.gov/ct2/show/NCT02127658

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Section: Discussionmentioning

confidence: 99%

Methicillin-Resistant Staphylococcus aureus Eradication and Decolonization in Children Study (Part 2): Patient- and Parent-Centered Outcomes of Decolonization

et al. 2020

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“…Outcomes research is increasingly incorporating the patient's perspective in the study design and development of outcome measures [26][27][28][29]. This is thought to improve the credibility of research results and can be considered an ethical imperative [30].…”

Section: Development Of Patient-centered Outcome Measuresmentioning

confidence: 99%

Methicillin-Resistant Staphylococcus aureus Eradication and Decolonization in Children Study (Part 2): Patient- and Parent-Centered Outcomes of Decolonization (Preprint)

Moore¹,

Wiehe²,

Lynch³

et al. 2019

Preprint

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BACKGROUND Skin and soft tissue infections (SSTIs) due to community-acquired methicillin-resistant <i>Staphylococcus aureus</i> (MRSA) can lead to a number of significant known medical outcomes including hospitalization, surgical procedures such as incision and drainage (I&D), and the need for decolonization procedures to remove the bacteria from the skin and nose and prevent recurrent infection. Little research has been done to understand patient and caregiver-centered outcomes associated with the successful treatment of MRSA infection. OBJECTIVE This study aimed to uncover MRSA decolonization outcomes that are important to patients and their parents in order to create a set of prototype measures for use in the MRSA Eradication and Decolonization in Children (MEDiC) study. METHODS A 4-hour, human-centered design (HCD) workshop was held with 5 adolescents (aged 10-18 years) who had experienced an I&D procedure and 11 parents of children who had experienced an I&D procedure. The workshop explored the patient and family experience with skin infection to uncover patient-centered outcomes of MRSA treatment. The research team analyzed the audio and artifacts created during the workshop and coded for thematic similarity. The final themes represent patient-centered outcome domains to be measured in the MEDiC comparative effectiveness trial. RESULTS The workshop identified 9 outcomes of importance to patients and their parents: fewer MRSA outbreaks, improved emotional health, improved self-perception, decreased social stigma, increased amount of free time, increased control over free time, fewer days of school or work missed, decreased physical pain and discomfort, and decreased financial burden. CONCLUSIONS This study represents an innovative HCD approach to engaging patients and families with lived experience with MRSA SSTIs in the study design and trial development to determine meaningful patient-centered outcomes. We were able to identify 9 major recurrent themes. These themes were used to develop the primary and secondary outcome measures for MEDiC, a prospectively enrolling comparative effectiveness trial. CLINICALTRIAL ClinicalTrials.gov NCT02127658; https://clinicaltrials.gov/ct2/show/NCT02127658

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“…Patient-centred care can be translated as care that is guided by the values and preferences of the patients,9 with patient preferences referring to the perspective, beliefs and expectations of patients regarding their health and life 10. As patient-centredness is acknowledged as one of the key dimensions of high-quality care,11 integrating the patient perspective in outcome assessment is increasingly advocated to achieve optimal outcomes in the treatment of RA 12 13…”

Section: Introductionmentioning

confidence: 99%

European Qualitative research project on Patient-preferred outcomes in Early Rheumatoid Arthritis (EQPERA): rationale, design and methods of a multinational, multicentre, multilingual, longitudinal qualitative study

Elst¹,

Bremander²,

Groef³

et al. 2019

BMJ Open

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IntroductionIncluding the patient perspective is important to achieve optimal outcomes in the treatment of rheumatoid arthritis (RA). Ample qualitative studies exist on patient outcomes in RA. A Belgian study recently unravelled what matters most to patients throughout the overwhelming and rapidly evolving early stage of RA. The present study, European Qualitative research project on Patient-preferred outcomes in Early Rheumatoid Arthritis (EQPERA) was created to contribute to a more universal understanding of patient-preferred health and treatment outcomes by integrating the perspectives of patients with early RA from three European countries.Methods and analysisIn EQPERA, a qualitative, explorative, longitudinal study will be implemented in The Netherlands and Sweden, parallel to the methods applied in the previously conducted Belgian study. In each country, a purposive sample of patients with early RA will be individually interviewed 3–6 months after start of the initial RA treatment and subsequently, the same participants will be invited to take part in a focus group 12–18 months after RA treatment initiation. Data collection and analysis will be independently conducted by the local research teams in their native language. A meta-analysis of the local findings will be performed to explore and describe similarities, differences and patterns across countries.Ethics and disseminationEthics approval was granted by the responsible local ethics committees. EQPERA follows the recommendations of the Declaration of Helsinki. Two main papers are foreseen (apart from the data reporting on the local findings) for peer-reviewed publication.

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Incorporating the patient's perspective in outcomes research

Cited by 23 publications

References 42 publications

Methicillin-Resistant Staphylococcus aureus Eradication and Decolonization in Children Study (Part 2): Patient- and Parent-Centered Outcomes of Decolonization

Methicillin-Resistant Staphylococcus aureus Eradication and Decolonization in Children Study (Part 2): Patient- and Parent-Centered Outcomes of Decolonization

Methicillin-Resistant Staphylococcus aureus Eradication and Decolonization in Children Study (Part 2): Patient- and Parent-Centered Outcomes of Decolonization (Preprint)

European Qualitative research project on Patient-preferred outcomes in Early Rheumatoid Arthritis (EQPERA): rationale, design and methods of a multinational, multicentre, multilingual, longitudinal qualitative study

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