A Poloméni1, S Lapusan2, C Bompoint3, M T Rubio4, M Mohty5. 1. Département d'Hématologie clinique et thérapie cellulaire, Hôpital Saint Antoine, Assistance Publique-Hôpitaux de Paris, 184 rue du Fbg Saint Antoine, 75012 Paris, France. Electronic address: alice.polomeni@sat.aphp.fr. 2. Département d'Hématologie clinique et thérapie cellulaire, Hôpital Saint Antoine, Assistance Publique-Hôpitaux de Paris, 184 rue du Fbg Saint Antoine, 75012 Paris, France. Electronic address: simona.lapusan@sat.aphp.fr. 3. Département d'Hématologie clinique et thérapie cellulaire, Hôpital Saint Antoine, Assistance Publique-Hôpitaux de Paris, 184 rue du Fbg Saint Antoine, 75012 Paris, France. Electronic address: caroline.bompoint@sat.aphp.fr. 4. Département d'Hématologie clinique et thérapie cellulaire, Hôpital Saint Antoine, Assistance Publique-Hôpitaux de Paris, 184 rue du Fbg Saint Antoine, 75012 Paris, France. Electronic address: marie-therese.rubio@sat.aphp.fr. 5. Département d'Hématologie clinique et thérapie cellulaire, Hôpital Saint Antoine, Assistance Publique-Hôpitaux de Paris, 184 rue du Fbg Saint Antoine, 75012 Paris, France. Electronic address: mohamad.mohty@inserm.fr.
Abstract
PURPOSE: Although evidence suggests considerable disruption to families, the impact of allo-Hematopoietic Stem Cell Transplantation (HSCT) on patients' partners and close relatives has not been sufficiently explored. The present mixed-methods study aimed to enlighten allo-HSCT effects on patients' and close relatives' quality of life (QOL) and their relationships. METHODS: Patients who received allo-HSCT between 2007 and 2010 (N = 58) and their close relatives (parents, partners and/or adult children) were asked to respond to an anonymous questionnaire including socio-demographic data, Likert-scale of the impact of HSCT on sexual, couple, family, professional and social life, as well as on perceived support. QOL of patients and close relatives was evaluated (by the FACT-BMT and by WHO-QOL-bref) as were the adjustments of the couples (patients/partners by the DAS). In-depth interviews were performed with patients and partners who consented to this proposition. RESULTS: Patients (N = 28) and close relatives (N = 48) reported fatigue, sleep and sexual problems, emotional distress and relationship difficulties. Patients were mainly concerned with « being a burden » to their close relatives. Close relatives' main concerns were changes in marital and family dynamics, disruptions in daily routine tasks and the responsibility for being the main provider of physical and emotional care. These difficulties increased after HSCT - notably when patients have to face the long-term consequences of the procedure. CONCLUSION: HSCT has a negative impact on patients' partners and other close relatives' QOL. Data on this topic is still scarce and this study might pave the way for future research in this field and notably guide psychosocial interventions.
PURPOSE: Although evidence suggests considerable disruption to families, the impact of allo-Hematopoietic Stem Cell Transplantation (HSCT) on patients' partners and close relatives has not been sufficiently explored. The present mixed-methods study aimed to enlighten allo-HSCT effects on patients' and close relatives' quality of life (QOL) and their relationships. METHODS:Patients who received allo-HSCT between 2007 and 2010 (N = 58) and their close relatives (parents, partners and/or adult children) were asked to respond to an anonymous questionnaire including socio-demographic data, Likert-scale of the impact of HSCT on sexual, couple, family, professional and social life, as well as on perceived support. QOL of patients and close relatives was evaluated (by the FACT-BMT and by WHO-QOL-bref) as were the adjustments of the couples (patients/partners by the DAS). In-depth interviews were performed with patients and partners who consented to this proposition. RESULTS:Patients (N = 28) and close relatives (N = 48) reported fatigue, sleep and sexual problems, emotional distress and relationship difficulties. Patients were mainly concerned with « being a burden » to their close relatives. Close relatives' main concerns were changes in marital and family dynamics, disruptions in daily routine tasks and the responsibility for being the main provider of physical and emotional care. These difficulties increased after HSCT - notably when patients have to face the long-term consequences of the procedure. CONCLUSION: HSCT has a negative impact on patients' partners and other close relatives' QOL. Data on this topic is still scarce and this study might pave the way for future research in this field and notably guide psychosocial interventions.
Authors: Jennifer M Knight; Mallory R Taylor; Kelly E Rentscher; Elisabeth C Henley; Hannah A Uttley; Ashley M Nelson; Lucie M Turcotte; Natalie S McAndrew; Hermioni L Amonoo; Lathika Mohanraj; Debra Lynch Kelly; Erin S Costanzo Journal: Front Immunol Date: 2022-07-05 Impact factor: 8.786
Authors: Rachel Phelan; Annie Im; Rebecca L Hunter; Yoshihiro Inamoto; Maria Teresa Lupo-Stanghellini; Alicia Rovo; Sherif M Badawy; Linda Burns; Hesham Eissa; Hemant S Murthy; Pinki Prasad; Akshay Sharma; Elizabeth Suelzer; Vaibhav Agrawal; Mahmoud Aljurf; Karen Baker; Grzegorz W Basak; David Buchbinder; Zachariah DeFilipp; Lana Desnica Grkovic; Ajoy Dias; Hermann Einsele; Michael L Eisenberg; Narendranath Epperla; Nosha Farhadfar; Arthur Flatau; Robert Peter Gale; Hildegard Greinix; Betty K Hamilton; Shahrukh Hashmi; Peiman Hematti; Kareem Jamani; Dipnarine Maharaj; John Murray; Seema Naik; Sunita Nathan; Steven Pavletic; Zinaida Peric; Drazen Pulanic; Richard Ross; Andrea Salonia; Isabel Sanchez-Ortega; Bipin N Savani; Tal Schechter; Ami J Shah; Stephanie M Smith; John A Snowden; Amir Steinberg; Douglas Tremblay; Sarah C Vij; Lauren Walker; Daniel Wolff; Jean A Yared; Hélène Schoemans; André Tichelli Journal: Transplant Cell Ther Date: 2021-10-29
Authors: Rachel Phelan; Annie Im; Hélène Schoemans; André Tichelli; Rebecca L Hunter; Yoshihiro Inamoto; Maria Teresa Lupo-Stanghellini; Alicia Rovo; Sherif M Badawy; Linda Burns; Hesham Eissa; Hemant S Murthy; Pinki Prasad; Akshay Sharma; Elizabeth Suelzer; Vaibhav Agrawal; Mahmoud Aljurf; Karen Baker; Grzegorz W Basak; David Buchbinder; Zachariah DeFilipp; Lana Desnica Grkovic; Ajoy Dias; Hermann Einsele; Michael L Eisenberg; Narendranath Epperla; Nosha Farhadfar; Arthur Flatau; Robert Peter Gale; Hildegard Greinix; Betty K Hamilton; Shahrukh Hashmi; Peiman Hematti; Kareem Jamani; Dipnarine Maharaj; John Murray; Seema Naik; Sunita Nathan; Steven Pavletic; Zinaida Peric; Drazen Pulanic; Richard Ross; Andrea Salonia; Isabel Sanchez-Ortega; Bipin N Savani; Tal Schechter; Ami J Shah; Stephanie M Smith; John A Snowden; Amir Steinberg; Douglas Tremblay; Sarah C Vij; Lauren Walker; Daniel Wolff; Jean A Yared Journal: Bone Marrow Transplant Date: 2022-05-06 Impact factor: 5.174
Authors: Timothy S Sannes; Teresa L Simoneau; Susan K Mikulich-Gilbertson; Crystal L Natvig; Benjamin W Brewer; Kristin Kilbourn; Mark L Laudenslager Journal: Support Care Cancer Date: 2018-10-24 Impact factor: 3.603
Authors: Francesco Sinatora; Annalisa Traverso; Silvia Zanato; Nicoletta Di Florio; Alessio Porreca; Marta Tremolada; Valentina Boscolo; Antonio Marzollo; Chiara Mainardi; Elisabetta Calore; Marta Pillon; Chiara Cattelan; Giuseppe Basso; Chiara Messina Journal: Front Psychol Date: 2017-08-08
Authors: Hussein Soudy; Irfan Maghfoor; Tusneem Ahmed M Elhassan; Eman Abdullah; Shahzad M Rauf; Ahmed Al Zahrani; Saad Akhtar Journal: Health Qual Life Outcomes Date: 2018-03-12 Impact factor: 3.186