Detail
Článek
Článek online
FT
Medvik - BMČ
  • Je něco špatně v tomto záznamu ?

Perceptions and Needs of Stakeholders Regarding MyPal Project's Electronic Patient-Reported Outcome App: Cross-Sectional Qualitative Focus Group Study

D. Kyrou, P. Bonotis, C. Kakalou, M. Vasilopoulou, L. Scarfò, M. Meyerheim, A. Sander, T. Arpáš, E. Kazantzaki, C. Maramis, C. Karamanidou

. 2025 ; 11 (-) : e57388. [pub] 20250813

Jazyk angličtina Země Kanada

Typ dokumentu časopisecké články

Perzistentní odkaz   https://www.medvik.cz/link/bmc25022013

BACKGROUND: Palliative care is crucial for patients with life-threatening and serious diseases such as cancer, as it addresses their physical, psychosocial, and spiritual needs. Hematological malignancies significantly contribute to global cancer cases, impacting both older adults and children. To meet the increasing demand for palliative care, electronic patient-reported outcome (ePRO) interventions offer valuable insights into patient monitoring and treatment decision-making. The MyPal project developed a digital ePRO solution to improve palliative care by enabling structured symptom reporting and promoting physician-patient communication. OBJECTIVE: This study aims to explore the perceptions, opinions, and needs of adult and pediatric patients with cancer, caregivers, and health care professionals (HCPs) regarding low-fidelity versions of the MyPal project's digital solution, which is designed to improve palliative cancer care. METHODS: A qualitative, cross-sectional study was conducted using 12 prepilot focus groups (FGs) across 4 European countries (Greece, Italy, Germany, and the Czech Republic) at participating hospitals and research centers. The FGs, held in person, included 61 participants, including 27 (44%) adult patients with chronic lymphocytic leukemia or myelodysplastic syndromes, 19 (31%) children with hematological malignancies or solid tumors and their parents, and 15 (25%) HCPs specializing in oncology and palliative care. A semistructured discussion guide, informed by vignettes and user personas, was used to facilitate discussions. Sessions were audio recorded, transcribed, and analyzed using thematic analysis to identify and extract themes and subthemes from the FG discussions. RESULTS: Three main themes emerged from the FG discussions. The first theme, improved care, showcased the project's potential to enhance health care through patient-reported measures by improving symptom monitoring, streamlining decision-making, and strengthening physician-patient communication. Patients and caregivers valued the ability to report symptoms remotely, reducing unnecessary hospital visits, while HCPs appreciated having structured patient data to guide treatment. The second theme, digital communication framework, revealed that while participants recognized the benefits of digital tools, they had concerns about data security, privacy, and clarity regarding communication protocols. Questions emerged about how and when HCPs would review and respond to patient-reported data. In the third theme, applicability for use in health care, participants emphasized the importance of the system's ease of use, particularly for older patients and young children. Concerns were raised about the potential intrusiveness of the system, particularly regarding notification frequency and the impact on daily life. HCPs highlighted workload challenges, suggesting the need for a structured alert system to prioritize urgent cases. CONCLUSIONS: Our findings indicate that ePRO-based interventions such as MyPal can improve palliative care by facilitating communication and patient monitoring. However, addressing privacy concerns, optimizing usability for diverse populations, and ensuring seamless integration into clinical workflows are critical for successful adoption. Insights from this study will inform future development and optimization of eHealth interventions in palliative care.

Citace poskytuje Crossref.org

000      
00000naa a2200000 a 4500
001      
bmc25022013
003      
CZ-PrNML
005      
20251023080014.0
007      
ta
008      
251014e20250813xxc f 000 0|eng||
009      
AR
024    7_
$a 10.2196/57388 $2 doi
035    __
$a (PubMed)40802976
040    __
$a ABA008 $b cze $d ABA008 $e AACR2
041    0_
$a eng
044    __
$a xxc
100    1_
$a Kyrou, Dimitrios $u Institute of Applied Biosciences, Centre for Research and Technology-Hellas, Thessaloniki, Greece $1 https://orcid.org/0000000220157617
245    10
$a Perceptions and Needs of Stakeholders Regarding MyPal Project's Electronic Patient-Reported Outcome App: Cross-Sectional Qualitative Focus Group Study / $c D. Kyrou, P. Bonotis, C. Kakalou, M. Vasilopoulou, L. Scarfò, M. Meyerheim, A. Sander, T. Arpáš, E. Kazantzaki, C. Maramis, C. Karamanidou
520    9_
$a BACKGROUND: Palliative care is crucial for patients with life-threatening and serious diseases such as cancer, as it addresses their physical, psychosocial, and spiritual needs. Hematological malignancies significantly contribute to global cancer cases, impacting both older adults and children. To meet the increasing demand for palliative care, electronic patient-reported outcome (ePRO) interventions offer valuable insights into patient monitoring and treatment decision-making. The MyPal project developed a digital ePRO solution to improve palliative care by enabling structured symptom reporting and promoting physician-patient communication. OBJECTIVE: This study aims to explore the perceptions, opinions, and needs of adult and pediatric patients with cancer, caregivers, and health care professionals (HCPs) regarding low-fidelity versions of the MyPal project's digital solution, which is designed to improve palliative cancer care. METHODS: A qualitative, cross-sectional study was conducted using 12 prepilot focus groups (FGs) across 4 European countries (Greece, Italy, Germany, and the Czech Republic) at participating hospitals and research centers. The FGs, held in person, included 61 participants, including 27 (44%) adult patients with chronic lymphocytic leukemia or myelodysplastic syndromes, 19 (31%) children with hematological malignancies or solid tumors and their parents, and 15 (25%) HCPs specializing in oncology and palliative care. A semistructured discussion guide, informed by vignettes and user personas, was used to facilitate discussions. Sessions were audio recorded, transcribed, and analyzed using thematic analysis to identify and extract themes and subthemes from the FG discussions. RESULTS: Three main themes emerged from the FG discussions. The first theme, improved care, showcased the project's potential to enhance health care through patient-reported measures by improving symptom monitoring, streamlining decision-making, and strengthening physician-patient communication. Patients and caregivers valued the ability to report symptoms remotely, reducing unnecessary hospital visits, while HCPs appreciated having structured patient data to guide treatment. The second theme, digital communication framework, revealed that while participants recognized the benefits of digital tools, they had concerns about data security, privacy, and clarity regarding communication protocols. Questions emerged about how and when HCPs would review and respond to patient-reported data. In the third theme, applicability for use in health care, participants emphasized the importance of the system's ease of use, particularly for older patients and young children. Concerns were raised about the potential intrusiveness of the system, particularly regarding notification frequency and the impact on daily life. HCPs highlighted workload challenges, suggesting the need for a structured alert system to prioritize urgent cases. CONCLUSIONS: Our findings indicate that ePRO-based interventions such as MyPal can improve palliative care by facilitating communication and patient monitoring. However, addressing privacy concerns, optimizing usability for diverse populations, and ensuring seamless integration into clinical workflows are critical for successful adoption. Insights from this study will inform future development and optimization of eHealth interventions in palliative care.
650    _2
$a lidé $7 D006801
650    _2
$a průřezové studie $7 D003430
650    12
$a hodnocení výsledků péče pacientem $7 D000071066
650    _2
$a mužské pohlaví $7 D008297
650    _2
$a zjišťování skupinových postojů $7 D017144
650    _2
$a ženské pohlaví $7 D005260
650    _2
$a dospělí $7 D000328
650    12
$a paliativní péče $x metody $7 D010166
650    _2
$a kvalitativní výzkum $7 D036301
650    _2
$a lidé středního věku $7 D008875
650    12
$a mobilní aplikace $7 D063731
650    12
$a nádory $x terapie $x psychologie $7 D009369
650    _2
$a dítě $7 D002648
650    _2
$a senioři $7 D000368
650    12
$a účast zainteresovaných stran $7 D000073597
650    _2
$a osoby pečující o pacienty $x psychologie $7 D017028
650    _2
$a zdravotnický personál $x psychologie $7 D006282
655    _2
$a časopisecké články $7 D016428
700    1_
$a Bonotis, Panos $u Institute of Applied Biosciences, Centre for Research and Technology-Hellas, Thessaloniki, Greece $1 https://orcid.org/000000029317547X
700    1_
$a Kakalou, Christine $u Institute of Applied Biosciences, Centre for Research and Technology-Hellas, Thessaloniki, Greece $1 https://orcid.org/000000019272410X
700    1_
$a Vasilopoulou, Maria $u Institute of Applied Biosciences, Centre for Research and Technology-Hellas, Thessaloniki, Greece $1 https://orcid.org/0009000523621728
700    1_
$a Scarfò, Lydia $u Strategic Research Program on Chronic lymphocytic leukemia, Division of Experimental Oncology, Università Vita Salute San Raffaele, Milano, Italy $1 https://orcid.org/0000000208440989
700    1_
$a Meyerheim, Marcel $u Clinic of Pediatric Oncology and Hematology, Faculty of Medicine, Saarland University Hospital, Homburg, Germany $1 https://orcid.org/0000000292949445
700    1_
$a Sander, Annette $u Clinic for Paediatric Oncology and Haematology, Hannover Medical School, Hannover, Germany $1 https://orcid.org/0000000189377485
700    1_
$a Arpáš, Tomáš $u Department of Internal Medicine - Hematology and Oncology, University Hospital and Masaryk University, Brno, Czech Republic $1 https://orcid.org/0000000251980307
700    1_
$a Kazantzaki, Eleni $u Department of Hematology, University Hospital of Heraklion, Heraklion, Greece $1 https://orcid.org/0000000278576582
700    1_
$a Maramis, Christos $u Institute of Applied Biosciences, Centre for Research and Technology-Hellas, Thessaloniki, Greece $1 https://orcid.org/0000000264170784
700    1_
$a Karamanidou, Christina $u Institute of Applied Biosciences, Centre for Research and Technology-Hellas, Thessaloniki, Greece $1 https://orcid.org/0000000228493690
773    0_
$w MED00216943 $t JMIR cancer $x 2369-1999 $g Roč. 11 (20250813), s. e57388
856    41
$u https://pubmed.ncbi.nlm.nih.gov/40802976 $y Pubmed
910    __
$a ABA008 $b sig $c sign $y - $z 0
990    __
$a 20251014 $b ABA008
991    __
$a 20251023080020 $b ABA008
999    __
$a ok $b bmc $g 2417054 $s 1260176
BAS    __
$a 3
BAS    __
$a PreBMC-MEDLINE
BMC    __
$a 2025 $b 11 $c - $d e57388 $e 20250813 $i 2369-1999 $m JMIR cancer $n JMIR Cancer $x MED00216943
LZP    __
$a Pubmed-20251014

Najít záznam

Citační ukazatele

Pouze přihlášení uživatelé

Možnosti archivace

Nahrávání dat ...