Engaging hematopoietic cell transplantation patients and caregivers in the design of print and mobile application individualized survivorship care plan tools

Abstract

Purpose-INSPIRE (INteractive Survivorship Program with Information and REsources) is an online health program that includes a mobile app, website, health action plan, and individualized survivorship care plans for adult hematopoietic cell transplant (HCT) survivors. The INSPIRE program integrates two previously effective randomized control trials that tested an internet-based program and patient-centered survivorship care plans for HCT survivors. Methods-Three focus groups were conducted with a total of 22 participants (20 patients, 2 caregivers/patient advocates) to explore patient and caregiver preferences and to optimize the patient-centered emphasis of INSPIRE. Adult (age > 18 years at the time of study entry) HCT recipients had to be at least 1-year post-HCT to participate; caregivers/patient advocates were also eligible. Participants had to be able to communicate in English, could have any diagnosis, transplant type, or donor source, and could have had multiple transplants. Results-All patient participants received an allogeneic HCT; average time since HCT was 8 years (range 2-22 years). The majority of participants were female (77.3%). Overall, the tools were well received by participants in this study, particularly the personalized features of all the tools. Major themes included interest in having the ability to tailor features to individual needs, and an interest in tracking information over time. Discussion-Engaging patients and caregivers is invaluable to optimize tools designed to improve HCT survivorship care.

Aplicativos móveis para pacientes pós transplante de medula óssea: revisão integrativa

“…(45,45%), são do ano de 2020 13,14,[16][17][18] , seguido do ano de 2021 com 2 (18,18%) das publicações 15,19 18,20 .…”

“…a grande maioria, 9 (81,81%), é proveniente do Estados Unidos13,14,16,[18][19][20][21][22][23] . Isto se dá muito provavelmente pelo fato, já conhecido e…”

“…realizada no mês de abril de 2021, portanto é esperado que até o final deste ano sejam publicados mais artigos referentes a esta temática. Em relação ao país em que os estudos foram desenvolvidos a análise mostra que rígidas, no sentido de alcançar um grau de recomendação mais significativo14,[16][17][18]20 .Quanto aos temas dos artigos observa-se que 4 (36,36%), representando a maioria, tem como tema "Protótipo de aplicativo móvel para pós TCTH pediátrico". O fato da maioria dos artigos tratar de aplicativos móveis voltados para pediatria pode estar associado a onipresença dos smartphones na vida das relacionados à alimentação durante a recuperação do TCTH e teve como conclusão de que tal aplicativo é uma intervenção viável para educar com estratégias de gerenciamento de sintomas23 .…”

The efficacy of information interventions for patients undergoing hematopoietic stem cell transplantation: A systematic review of randomized trials

“…Obtaining information is also achieved through educational interventions. [19][20][21][22][23][24][25][26] While there are a number of tools that may be harnessed to improve patients' understanding of their diagnosis and treatment, the use of such strategies should be patient-centered to ensure the type and amount of information provided by health care professionals addresses the needs and preferences of the patient. 15,[27][28][29] Clinical guidelines recommend that HSCT recipients are continually informed during the transplantation journey and encouraged to ask questions after the information session has been completed.…”

The efficacy of a specifically designed printed material on satisfaction from information provision and Quality of Life of hematopoietic stem cell transplantation patients: A randomized controlled trial

“…These include patient-clinician interaction, written/printed leaflets, audio-visual materials, telephone helplines, and more recently, websites accessed via the Internet. 1,[14][15][16][17] Recent reviews of randomized controlled clinical trials (RCTs) have evaluated the impact of information-giving interventions and demonstrated that in the main, these methods are effective, when enhancing understanding, knowledge and recall, and promoting satisfaction with communication. However, some information sources often are not tailored to the individual needs of cancer patients.…”