Myeloproliferative Neoplasm Quality of Life (MPN-QOL) Study Group: Interim Results from the MPN Experimental Assessment of Symptoms By Utilizing Repetitive Evaluation (MEASURE) Trial

Scotch, Allison; Scherber, Robyn M.; Zhang, Nan; Kosiorek, Heidi E.; Dueck, Amylou C.; Geyer, Holly; Fauble, Veena; Vannucchi, Alessandro M.; Fuentes, Ana Kerguelen; Andersen, Christen Lykkegaard; Ejerblad, Elisabeth; Birgegård, Gunnar; Johansson, Peter; Andréasson, Björn; Ross, David M.; Sackmann, Federico; Demory, Jean-Loup; Tam, Constantine S.; Michiels, Jan; Radia, Deepti; Mahalakshmi, Mohan; Jennings, Daniel M; Ewing, Joanne; Wadelin, Frances; Lown, Robert; Drew, Victoria; Hudson, John; McMullin, Mary Frances; Swe, Wunna; Cullis, Jonathan O.; Sargant, Nigel; Moreton, Paul; Kilner, Mari; Cargo, Catherine; Sekhar, Mallika; Shekouhi, Satareh; Mesa, Ruben A.

doi:10.1182/blood.v128.22.5479.5479

Cited by 4 publications

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“…There has been significant advancement in the pharmacological treatment of MPNs; however, for most patients, residual symptoms (ie, fatigue, anxiety, depression, pain, and sleep disturbance) persist, even with active pharmacologic therapy [8,9]. Additionally, standard-of-care treatments for MPN, including medication/drug therapy (ie, hydroxyurea), phlebotomy, and bone marrow transplant (the only curative therapy, reserved for those with severely reduced life expectancy), are associated with worsened symptoms and a reduced quality of life [10]. There is a need for research examining adjuvant, nonpharmacologic approaches (eg, mindfulness-based therapies) for MPN patients that may improve symptoms and that are not accompanied by negative side effects.…”

Section: Introductionmentioning

confidence: 99%

Smartphone-Based Meditation for Myeloproliferative Neoplasm Patients: Feasibility Study to Inform Future Trials

Huberty¹,

Eckert²,

Larkey³

et al. 2019

JMIR Form Res

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Background Myeloproliferative neoplasm (MPN) patients often report high symptom burden that persists despite the best available pharmacologic therapy. Meditation has gained popularity in recent decades as a way to manage cancer patient symptoms. Objective The aim of this study was to examine the feasibility of 2 different consumer-based meditation smartphone apps in MPN patients and to examine the limited efficacy of smartphone-based meditation on symptoms compared with an educational control group. Methods Patients (n=128) were recruited nationally through organizational partners and social media. Eligible and consented patients were enrolled into 1 of 4 groups, 2 of which received varying orders of 2 consumer-based apps (10% Happier and Calm ) and 2 that received one of the apps alone for the second 4 weeks of the 8-week intervention after an educational control condition. Participants were asked to perform 10 min of meditation per day irrespective of the app and the order in which they received the apps. Feasibility outcomes were measured at weeks 5 and 9 with a Web-based survey. Feasibility outcomes were acceptability, demand, and limited efficacy for depression, anxiety, pain intensity, sleep disturbance, sexual function, quality of life, global health, and total symptom burden. Results A total of 128 patients were enrolled across all 4 groups, with 73.4% (94/128) patients completing the intervention. Of the participants who completed the 10% Happier app, 61% (46/76) enjoyed it, 66% (50/76) were satisfied with the content, and 77% (59/76) would recommend to others. Of those who completed the Calm app, 83% (56/68) enjoyed it, 84% (57/68) were satisfied with the content, and 97% (66/68) would recommend to others. Of those who completed the educational control, 91% (56/61) read it, 87% (53/61) enjoyed it, and 71% (43/61) learned something. Participants who completed the 10% Happier app averaged 31 (SD 33) min/week; patients completing the Calm app averaged 71 (SD 74) min/week. 10% Happier app participants saw small effects on anxiety ( P <.001 d =−0.43), depression ( P =.02; d =−0.38), sleep disturbance ( P =.01; d =−0.40), total symptom burden ( P =.13; d =−0.27), and fatigue ( P =.06; d =−0.30), and moderate effects on physical health ( P <.001; d =0.52). Calm app participants saw small effects on anxiety ( P =.29; d =−0.22...

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Section: Introductionmentioning

confidence: 99%

Smartphone-Based Meditation for Myeloproliferative Neoplasm Patients: Feasibility Study to Inform Future Trials

Huberty¹,

Eckert²,

Larkey³

et al. 2019

JMIR Form Res

View full text Add to dashboard Cite

show abstract

“…The only potentially curative option is allogenic stem-cell transplantation, but it is reserved for high-risk myelofibrosis patients. Moreover, the current best available pharmacologic therapy does not completely resolve symptoms, and other standard-of-care treatments for MPN are associated with worsened fatigue, inactivity, and a reduced quality of life [3]. Despite this, patients often have a favorable life expectancy (unique compared with most malignancies), with as much as two-third of MPN patients living up to 15 years after diagnosis and some with the same life expectancy as the general population, rendering MPN a c hronic cancer condition [4,5].…”

Section: Introductionmentioning

confidence: 99%

Experiences of Using a Consumer-Based Mobile Meditation App to Improve Fatigue in Myeloproliferative Patients: Qualitative Study

et al. 2019

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Background Myeloproliferative neoplasm (MPN) patients suffer from long-term symptoms and reduced quality of life. Mindfulness meditation is a complementary therapy shown to be beneficial for alleviating a range of cancer-related symptoms; however, in-person meditation interventions are difficult for cancer patients to attend. Meditation via a mobile phone app represents a novel approach in MPN patients for delivering meditation. Objective The study aimed to report MPN patients’ (ie, naïve or nearly naïve meditators) perceptions of meditation and explore their experiences in the context of using a mobile phone for meditation after participation in an 8-week consumer-based meditation app feasibility study. Methods MPN patients (n=128) were recruited nationally through organizational partners and social media. Eligible and consented patients were enrolled into 1 of 4 groups, 2 that received varying orders of 2 consumer-based apps ( 10% Happier and Calm ) and 2 that received one of the apps alone for the second 4 weeks of the 8-week intervention after an educational control condition. Participants were asked to perform 10 min per day of mobile phone-based meditation, irrespective of the app and order in which they received the apps. At the conclusion of the study, participants were asked whether they would like to participate in a 20-min phone interview comprising 9 to 10 questions to discuss their perceptions and experiences while using the mobile phone meditation apps. The interviews were transcribed verbatim and imported into NVivo 12 (QSR International) for coding and analysis, using a combination of deductive and inductive methods to organize the data, generate categories, and develop themes and subthemes. Results A total of 48 MPN patients completed postintervention interviews, of which 29% (14/48) of the patients only used the 10% Happier app, 21% (10/48) of the patients only used the Calm app, and 46% (22/48) of the patients used both apps during the 8-week intervention. Themes identified in the analysis of interview data related to (1) perceptions of meditation before, during, and after the study, (2) perceptions of the Calm app, (3) perceptions of the 10% Happier app, (4) perceived impacts of using the meditation apps, (5) overall experiences of participating in the study, (6) recommendations surrounding meditation for other MPN patients, and (7) plans to continue meditation. Conclusions The qualitative findings of this study suggest that MPN patients who are naïve or nearly naïve meditators perceived mobile phone meditation as enjoyable, preferred the Calm app over the 10% Happier app, perceived the Calm app as more appealing (eg, narrat...

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“… 7 , 8 Furthermore, standard-of-care pharmacological treatments (ie, medications/drug therapy, phlebotomy, bone marrow transplant) are associated with increased inactivity, pruritus, fatigue, bone pain, and reduced QoL. 9 …”

Section: Introductionmentioning

confidence: 99%

Perceptions of Myeloproliferative Neoplasm Patients Participating in an Online Yoga Intervention: A Qualitative Study

et al. 2018

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Myeloproliferative neoplasms (MPNs) are rare hematological malignancies with a significant symptom burden often left unresolved despite recent advances in pharmacological therapy. Yoga is a nonpharmacological strategy that has been shown to improve symptoms in other cancers and may be effective for improving symptoms in MPN patients. Online yoga helps address many of the commonly reported barriers of cancer patients to in-person interventions and may make yoga more accessible to MPNs. An exploration of MPN patient perceptions of participation in online yoga is needed to tailor interventions to patient needs and inform future studies. The purpose of this study was to explore the perceptions of MPN patients participating in a 12-week online yoga intervention. This article represents the combined qualitative interview data from two studies. Participants were asked to complete 60 min/wk of online, home-based yoga and were asked to participate in a 15- to 20-minute phone interview postintervention. The qualitative data was coded in NVivo 11 for content analysis. The total sample included 39 MPN patients. Online yoga was well accepted and liked among these patients. They reported physical (eg, improved sleep, reduced fatigue) and mental (eg, reduced stress) health benefits and liked the convenience of being able to do yoga at home. Online yoga provides a feasible and attractive format through which to deliver a nonpharmacological intervention among MPN patients. Randomized controlled trials are needed to confirm the effects of online yoga on MPN patient symptoms. The qualitative findings presented here help inform the development of these future trials.

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Myeloproliferative Neoplasm Quality of Life (MPN-QOL) Study Group: Interim Results from the MPN Experimental Assessment of Symptoms By Utilizing Repetitive Evaluation (MEASURE) Trial

Cited by 4 publications

References 0 publications

Smartphone-Based Meditation for Myeloproliferative Neoplasm Patients: Feasibility Study to Inform Future Trials

Smartphone-Based Meditation for Myeloproliferative Neoplasm Patients: Feasibility Study to Inform Future Trials

Experiences of Using a Consumer-Based Mobile Meditation App to Improve Fatigue in Myeloproliferative Patients: Qualitative Study

Perceptions of Myeloproliferative Neoplasm Patients Participating in an Online Yoga Intervention: A Qualitative Study

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