The Myeloma Patient Outcome Scale is the first quality of life tool developed for clinical use and validated in patients with follicular lymphoma

Davies, Joanna M.; Osborne, Thomas R.; Edmonds, Polly; Schey, Steve; Devereux, Stephen; Higginson, Irene J; Ramsenthaler, Christina

doi:10.1111/ejh.12864

Cited by 7 publications

(13 citation statements)

References 39 publications

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“…2 Given the large number of individuals undergoing treatment of blood cancers or currently in remission, evidence-based strategies promoting quality of life and supportive care have become essential. [3][4][5] Cancer survivorship research has encompassed the physical, emotional, social, and financial consequences of a cancer diagnosis. However, the longterm health-related quality of life of patients with lymphoma has remained understudied, [6][7][8] and more exploratory research is necessary to determine how these complex needs can be assessed.…”

Section: Introductionmentioning

confidence: 99%

Priorities for Rural Lymphoma Survivors: A Qualitative Study

Chen

Payne

Dance

et al. 2020

Clinical Lymphoma Myeloma and Leukemia

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A qualitative study of lymphoma survivors living in rural Georgia was conducted using 12 individual semistructured telephone interviews. The travel distance was the greatest barrier to care, with other issues including communication and navigating between local clinics and larger cancer centers. The participants saw technology as an important solution and detailed their research priorities. Background: We gathered rural patient perspectives on lymphoma care and unmet needs throughout the treatment course to better understand their attitudes toward treatment and their barriers to participating in clinical research studies. Patients and Methods: We conducted 12 individual semi-structured telephone interviews in the spring of 2018 with lymphoma survivors from rural counties in Georgia. Patients were identified by a residential address in counties classified as rural according to the Rural-Urban Commuting Areas codes. Participants were recruited from regional patient education conferences and from current research participants at a university research hospital in Georgia. The interviews were recorded and transcribed verbatim. Thematic analysis and MAXQDA, version 18.0.8, were used to facilitate a constant comparative coding process during theme development. Results: The greatest barrier to care was the travel distance. The participants described difficulty navigating between local clinics and larger cancer centers. The lack of communication between the local and specialized clinics complicated the process, and participants had difficulty contacting or seeking advice from the team at the larger cancer centers. Seeking treatment from specialized clinics farther away introduced additional barriers. Most participants agreed that the use of technology was important for improved communication. Participants described lymphoma etiology, subtype-specific studies, alternative therapies, and quality of life as key research priorities. Conclusion: These findings suggest that targeted research and interventions are necessary to address the specific needs of rural patients with and survivors of lymphoma. To address the disparity in health outcomes within rural populations, healthcare professionals and investigators can use these data to engage rural patients in treatment decision-making and research planning.

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Section: Introductionmentioning

confidence: 99%

Priorities for Rural Lymphoma Survivors: A Qualitative Study

Chen

Payne

Dance

et al. 2020

Clinical Lymphoma Myeloma and Leukemia

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“…follicular lymphoma patients (Osborne et al, 2015;Davies et al, 2017), and therefore cannot be applied to other HM. Among the identified 30 HRQoL instruments, only partial evidence on the content validity was identified for EORTC QLQ-MY24, FACT-Leu, EORTC Leu, FACT-Lym, QoL-E (Goswami et al, 2019).…”

Section: Introductionmentioning

confidence: 99%

Development of a Novel Hematological Malignancy Specific Patient-Reported Outcome Measure (HM-PRO): Content Validity

Goswami

Oliva

Ionova³

et al. 2020

Front. Pharmacol.

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Background: The quality of life of patients at all stages of hematological malignancy is greatly affected by the disease and its treatment. There is a wide range of healthrelated quality of life (HRQoL) issues important to these patients. Any new instrument developed to measure HRQoL of such patients should be content valid, i.e., the items should be comprehensively relevant to the patients and their health condition. The aim of the present study was to examine content validity of a hematological malignancy specific patient reported outcome measure (HM-PRO) developed for use in routine clinical practice. Methods: Following literature review and semi-structured interviews, the generated themes and sub-themes were discussed to develop the prototype version of the HM-PRO. A 4-step approach was used for content validation: initial testing and cognitive interviewing; item rating; content validity panel meeting; final field testing and cognitive interviewing. Additional questions related to patients' perception of recall period and preferred sentence structure (i.e., question or statement) of the items were also asked during cognitive interviews. Results: The content analysis of 129 transcribed semi-structured interviews resulted in the prototype version of the instrument consisting of 58 items grouped into two parts: Part A (impact/HRQoL-34 items) and Part B (signs and symptoms-24 items). The initial testing showed intra-class correlation coefficient (ICC) of >0.8 for both Part A and Part B. Item rating for language clarity, completeness, relevance, and response scale by experts and patients showed content validity index for scales average >0.8 for both Part A and Part B, except 0.64 for relevance for Part A by the patient panel. The final testing of the revised version of the instrument showed the Cronbach's alpha value of

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“…The MyPOS comprises a list of 13 symptoms and 20 QoL items which are scored on a 5-point Likert scale and summed into a total score and three subscale scores. Content and construct validity as well as reliability of the MyPOS have been established in clinically representative samples of all disease stages [22,26,27]. Its reliability and responsiveness in longitudinal monitoring of QoL have been shown to be satisfactory to good [27].…”

Section: Introductionmentioning

confidence: 99%

Challenges in the cultural adaptation of the German Myeloma Patient Outcome Scale (MyPOS): an outcome measure to support routine symptom assessment in myeloma care

et al. 2020

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Background: Patients with multiple myeloma report more problems with quality of life (QoL) than other haematological malignancies over the course of their incurable illness. The patient-centred Myeloma Patient Outcome Scale (MyPOS) was developed to assess and monitor symptoms and supportive care factors in routine care. Our aim was to translate and culturally adapt the outcome measure to the German context, and to explore its face and content validity. Methods: Translation and cultural adaptation following established guidelines used an exploratory, sequential mixed method study design. Steps included: (1) forward translation to German; (2) backward translation to English; (3) expert review; (4) focus groups with the target population (patients, family members, healthcare professionals) to achieve conceptual equivalence; (5) cognitive interviews using Tourangeau's model with think-aloud technique to evaluate comprehension and acceptability; (6) final review. Results were analysed using thematic analysis.

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The Myeloma Patient Outcome Scale is the first quality of life tool developed for clinical use and validated in patients with follicular lymphoma

Cited by 7 publications

References 39 publications

Priorities for Rural Lymphoma Survivors: A Qualitative Study

Priorities for Rural Lymphoma Survivors: A Qualitative Study

Development of a Novel Hematological Malignancy Specific Patient-Reported Outcome Measure (HM-PRO): Content Validity

Challenges in the cultural adaptation of the German Myeloma Patient Outcome Scale (MyPOS): an outcome measure to support routine symptom assessment in myeloma care

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