The results of a survey about psychosocial care throughout Europe

Kód výsledku v IS VaVaI

<a href="https://www.isvavai.cz/riv?ss=detail&h=RIV%2F65269705%3A_____%2F23%3A00077824" target="_blank" >RIV/65269705:_____/23:00077824 - isvavai.cz</a>

Výsledek na webu

<a href="https://onlinelibrary.wiley.com/doi/10.1111/hae.14767" target="_blank" >https://onlinelibrary.wiley.com/doi/10.1111/hae.14767</a>

DOI - Digital Object Identifier

<a href="http://dx.doi.org/10.1111/hae.14767" target="_blank" >10.1111/hae.14767</a>

Jazyk výsledku

angličtina

Název v původním jazyce

The results of a survey about psychosocial care throughout Europe

Popis výsledku v původním jazyce

Haemophilia is a chronic disease characterized by a deficiency of clotting factor VIII (haemophilia A) or clotting factor IX (haemophilia B), so patients need continuous lifelong treatment. Although the treatment of haemophilia has rapidly changed in recent decades and life expectancy has increased dramatically, studies showed that haemophilia still has a major impact on daily life.1 Patients with haemophilia face difficulties with treatment adherence, social impact and limitations due to disease burden, finding a suitable job, acceptance of diagnosis, and difficulties in adapting to the disorder for various reasons.1-3In haemophilia, as in other chronic diseases, psychosocial care helps patients to overcome their management difficulties and can also help to improve their adherence. For that, the reality claims the need to organize different haemophilia treatment centres (HTCs) into multidisciplinary teams. Patients who are able to deal effectively with their emotional, interpersonal and health problems are more resilient, healthier and their treatment costs are less.4 However, when patients and families do not accept the situation, complications that affect their well-being and quality of life are observed.3, 5The importance of psychosocial care is increasingly acknowledged in haemophilia care, although it is unclear if all patients in Europe receive psychosocial care as part of standard care. However, in some countries access to psychosocial care services lags behind.5, 6 To promote attention for psychosocial care within the HTCs in Europe, the European Association for Haemophilia and Allied Disorders (EAHAD) recently established a Psychosocial Committee. A first step for this committee is to get insight into the current position of psychosocial services for patients with bleeding disorders across Europe.In December 2019, a self-developed psychosocial survey was sent out to 145 healthcare professional clinicians at all EUHANET-certified Haemophilia Comprehensive Care Centres and HTC in Europe (38 centres in 21 countries). The psychosocial survey was developed by the members (i.e., psychologists, social workers, director of psychosocial charity in bleeding disorders) of the EAHAD Psychosocial Committee. It consisted of 18 questions (7 open questions, 11 multiple choice questions) regarding the role and background of the respondent in the HTC and the organization of psychosocial care in their HTC.Descriptive analyses were done with the use of the Statistical Package for Social Sciences (SPSS) to get more insight into the access to psychosocial care for patients with bleeding disorders in the HTCs in Europe. Open questions were analysed qualitatively. Informed consent was obtained from all respondents included in this study.The psychosocial survey was completed in 38 HTCs (100%) in 21 countries by 39 clinicians. The participant distribution was follows: haematologist (41%), paediatric-haematologist (13%), paediatrician (8%), internist (5%), social worker (15%), psychologist (10%), nurse (5%) or physiotherapist (3%).The data showed three quarters of the respondents (77%) believe that psychosocial care is an essential part of haemophilia treatment. In 28 of the 38 (74%) included HTCs, a psychosocial professional (i.e., psychologist or social worker) is part of the multidisciplinary team and in 23 centres (60,5%) psychosocial support is given as part of the patient&apos;s care plan. In most HTC treatment centres 1 or 2 psychologists are available for haemophilia care for a wide range of hours per week (1-71 h). As shown in Figure 1, the main psychosocial care is offered to patients at the beginning (when parents received diagnosis) due to this being a critical moment. Other critical points were in emergencies, for admitted patients or in other situations. Specifically, patients had psychosocial care at diagnosis (parents), adolescence (transition from paediatric to adult health care), inhibitor patients, etc. Psychosocial care is least often offered to women with bleeding disorders, this could be because until not long ago, carriers were only seen as caregivers and not as patients. Furthermore, most patients were given access to psychosocial care via referral from their doctor or another clinician (72%-e.g., nurse). Patient organizations offer this psychosocial care the least, most of the time due to a lack of resources. Twenty-eight of the respondents mentioned that their HTC has a waiting list for patients to access psychological support. The waiting time varies from 1 week to 6 months, when 1-week maximum would be preferable. This data is similar to that of O&apos;Mahony et al. in their survey done in 2017, where they refer that this has been the least available service since we started our survey in 2019.The survey suggests psychosocial support offered in a HTC consultation is more or less effective but not enough to address specific issues experienced by patients affected by bleeding disorders. There are some points of improvement like, shorter waiting lists, psychologist readily available, more time for psychologist or more staff working in psychology. In addition, some respondents stated that it is also important that the psychologist is specialised in bleeding disorders, speaks multiple languages and that the patients can choose the type of psychological assistance (e.g., individual consultation, support groups).Overall, the majority (76%) of the responders had a psychosocial professional (psychologist or social worker) as part of their multidisciplinary team, and little more than half (61%) provided psychosocial support as part of patient&apos;s care plan. Respondents emphasized the importance of including a psychologist as part of the multidisciplinary team or routine care as it facilitates a comprehensive care package for haemophilia patients and their families. However, the reality in daily clinical practice is different. In fact, a 26% responded that health care providers are probably very occupied and psychosocial care is always not a main priority for the clinicians.The World Federation of Haemophilia (WFH) recently promoted a &quot;comprehensive care&quot; model.7 This model includes two fundamental aspects: first, the importance of jointly promoting physical and psychosocial health. Second, the necessity of combining multidisciplinary teams that are responsive to the wide-ranging needs of patients and their families. Ultimately, this model aims to improve the quality of life of patients with haemophilia and their families, and decreasing morbidity and mortality. The comprehensive care should be continuous and long-term. The specific actions should be focused on resources and strategies to help the management of bleeding events, the prevention of (potential) related complications and to cope with everyday risks and needs (depending on features of different life stages), as well as, adequate training for patients and their families.In addition, today, we are facing a therapeutic revolution or as others call it, the &quot;golden age&quot; of haemophilia treatment.8 It will mean a change in care: with some patients or parents&apos; mistrusting these advances, despite their proven safety and efficacy.9 Psychosocial support is therefore more important than ever, in order to help patients and parents navigate through this positive yet slightly scary new era. It could help to facilitate an open discussion between patients and their families on newly selected treatment (a shared decision-making process) and take into account their needs and expectations (physical and psychological) to personalized treatment.Since sending out the survey in 2019, the world has experienced the Covid-19 pandemic which had a major effect on our lives. The impact on clinicians, and patients alike, has brought into even sharper focus the need for psychosocial support. There has been much greater recognition that mental health is an important facet of an individual&apos;s holistic wellbeing, and the availability of psychosocial support for patients has increased during the pandemic.According to the results, psychosocial care only covers a part of the patients&apos; and their families&apos; needs. Psychosocial care is not offered to patients regularly, but on an occasional basis. The survey is a preliminary exploration of real psychosocial care in Europe in practice (a strength), but it has not been possible to reach all the centres. There was not a high response-rate because not all professionals in the multidisciplinary teams participated. And we could not influence the participants invited, as we sent the invitation to heads of the HTC with the request to distribute it among their team. For this reason, a weakness is the generalization of the results. However, we have at least one representation from each of the centres to which it was sent. In conclusion, psychosocial care has been an aspiration for centres that look after patients with haemophilia, but this is not always achieved, and there are improvements to be made regarding availability, resources, patient groups and geographic distribution. An important next step for the Psychosocial Committee will be the development of psychosocial recommendations or guidelines within Haemophilia care.

Název v anglickém jazyce

The results of a survey about psychosocial care throughout Europe

Popis výsledku anglicky

Haemophilia is a chronic disease characterized by a deficiency of clotting factor VIII (haemophilia A) or clotting factor IX (haemophilia B), so patients need continuous lifelong treatment. Although the treatment of haemophilia has rapidly changed in recent decades and life expectancy has increased dramatically, studies showed that haemophilia still has a major impact on daily life.1 Patients with haemophilia face difficulties with treatment adherence, social impact and limitations due to disease burden, finding a suitable job, acceptance of diagnosis, and difficulties in adapting to the disorder for various reasons.1-3In haemophilia, as in other chronic diseases, psychosocial care helps patients to overcome their management difficulties and can also help to improve their adherence. For that, the reality claims the need to organize different haemophilia treatment centres (HTCs) into multidisciplinary teams. Patients who are able to deal effectively with their emotional, interpersonal and health problems are more resilient, healthier and their treatment costs are less.4 However, when patients and families do not accept the situation, complications that affect their well-being and quality of life are observed.3, 5The importance of psychosocial care is increasingly acknowledged in haemophilia care, although it is unclear if all patients in Europe receive psychosocial care as part of standard care. However, in some countries access to psychosocial care services lags behind.5, 6 To promote attention for psychosocial care within the HTCs in Europe, the European Association for Haemophilia and Allied Disorders (EAHAD) recently established a Psychosocial Committee. A first step for this committee is to get insight into the current position of psychosocial services for patients with bleeding disorders across Europe.In December 2019, a self-developed psychosocial survey was sent out to 145 healthcare professional clinicians at all EUHANET-certified Haemophilia Comprehensive Care Centres and HTC in Europe (38 centres in 21 countries). The psychosocial survey was developed by the members (i.e., psychologists, social workers, director of psychosocial charity in bleeding disorders) of the EAHAD Psychosocial Committee. It consisted of 18 questions (7 open questions, 11 multiple choice questions) regarding the role and background of the respondent in the HTC and the organization of psychosocial care in their HTC.Descriptive analyses were done with the use of the Statistical Package for Social Sciences (SPSS) to get more insight into the access to psychosocial care for patients with bleeding disorders in the HTCs in Europe. Open questions were analysed qualitatively. Informed consent was obtained from all respondents included in this study.The psychosocial survey was completed in 38 HTCs (100%) in 21 countries by 39 clinicians. The participant distribution was follows: haematologist (41%), paediatric-haematologist (13%), paediatrician (8%), internist (5%), social worker (15%), psychologist (10%), nurse (5%) or physiotherapist (3%).The data showed three quarters of the respondents (77%) believe that psychosocial care is an essential part of haemophilia treatment. In 28 of the 38 (74%) included HTCs, a psychosocial professional (i.e., psychologist or social worker) is part of the multidisciplinary team and in 23 centres (60,5%) psychosocial support is given as part of the patient&apos;s care plan. In most HTC treatment centres 1 or 2 psychologists are available for haemophilia care for a wide range of hours per week (1-71 h). As shown in Figure 1, the main psychosocial care is offered to patients at the beginning (when parents received diagnosis) due to this being a critical moment. Other critical points were in emergencies, for admitted patients or in other situations. Specifically, patients had psychosocial care at diagnosis (parents), adolescence (transition from paediatric to adult health care), inhibitor patients, etc. Psychosocial care is least often offered to women with bleeding disorders, this could be because until not long ago, carriers were only seen as caregivers and not as patients. Furthermore, most patients were given access to psychosocial care via referral from their doctor or another clinician (72%-e.g., nurse). Patient organizations offer this psychosocial care the least, most of the time due to a lack of resources. Twenty-eight of the respondents mentioned that their HTC has a waiting list for patients to access psychological support. The waiting time varies from 1 week to 6 months, when 1-week maximum would be preferable. This data is similar to that of O&apos;Mahony et al. in their survey done in 2017, where they refer that this has been the least available service since we started our survey in 2019.The survey suggests psychosocial support offered in a HTC consultation is more or less effective but not enough to address specific issues experienced by patients affected by bleeding disorders. There are some points of improvement like, shorter waiting lists, psychologist readily available, more time for psychologist or more staff working in psychology. In addition, some respondents stated that it is also important that the psychologist is specialised in bleeding disorders, speaks multiple languages and that the patients can choose the type of psychological assistance (e.g., individual consultation, support groups).Overall, the majority (76%) of the responders had a psychosocial professional (psychologist or social worker) as part of their multidisciplinary team, and little more than half (61%) provided psychosocial support as part of patient&apos;s care plan. Respondents emphasized the importance of including a psychologist as part of the multidisciplinary team or routine care as it facilitates a comprehensive care package for haemophilia patients and their families. However, the reality in daily clinical practice is different. In fact, a 26% responded that health care providers are probably very occupied and psychosocial care is always not a main priority for the clinicians.The World Federation of Haemophilia (WFH) recently promoted a &quot;comprehensive care&quot; model.7 This model includes two fundamental aspects: first, the importance of jointly promoting physical and psychosocial health. Second, the necessity of combining multidisciplinary teams that are responsive to the wide-ranging needs of patients and their families. Ultimately, this model aims to improve the quality of life of patients with haemophilia and their families, and decreasing morbidity and mortality. The comprehensive care should be continuous and long-term. The specific actions should be focused on resources and strategies to help the management of bleeding events, the prevention of (potential) related complications and to cope with everyday risks and needs (depending on features of different life stages), as well as, adequate training for patients and their families.In addition, today, we are facing a therapeutic revolution or as others call it, the &quot;golden age&quot; of haemophilia treatment.8 It will mean a change in care: with some patients or parents&apos; mistrusting these advances, despite their proven safety and efficacy.9 Psychosocial support is therefore more important than ever, in order to help patients and parents navigate through this positive yet slightly scary new era. It could help to facilitate an open discussion between patients and their families on newly selected treatment (a shared decision-making process) and take into account their needs and expectations (physical and psychological) to personalized treatment.Since sending out the survey in 2019, the world has experienced the Covid-19 pandemic which had a major effect on our lives. The impact on clinicians, and patients alike, has brought into even sharper focus the need for psychosocial support. There has been much greater recognition that mental health is an important facet of an individual&apos;s holistic wellbeing, and the availability of psychosocial support for patients has increased during the pandemic.According to the results, psychosocial care only covers a part of the patients&apos; and their families&apos; needs. Psychosocial care is not offered to patients regularly, but on an occasional basis. The survey is a preliminary exploration of real psychosocial care in Europe in practice (a strength), but it has not been possible to reach all the centres. There was not a high response-rate because not all professionals in the multidisciplinary teams participated. And we could not influence the participants invited, as we sent the invitation to heads of the HTC with the request to distribute it among their team. For this reason, a weakness is the generalization of the results. However, we have at least one representation from each of the centres to which it was sent. In conclusion, psychosocial care has been an aspiration for centres that look after patients with haemophilia, but this is not always achieved, and there are improvements to be made regarding availability, resources, patient groups and geographic distribution. An important next step for the Psychosocial Committee will be the development of psychosocial recommendations or guidelines within Haemophilia care.

Druh

J_imp - Článek v periodiku v databázi Web of Science

CEP obor

—

OECD FORD obor

30205 - Hematology

Projekt

—

Návaznosti

I - Institucionalni podpora na dlouhodoby koncepcni rozvoj vyzkumne organizace

Rok uplatnění

2023

Kód důvěrnosti údajů

S - Úplné a pravdivé údaje o projektu nepodléhají ochraně podle zvláštních právních předpisů

Název periodika

Haemophilia

ISSN

1351-8216

e-ISSN

1365-2516

Svazek periodika

29

Číslo periodika v rámci svazku

3

Stát vydavatele periodika

US - Spojené státy americké

Počet stran výsledku

4

Strana od-do

917-920

Kód UT WoS článku

000940692400001

EID výsledku v databázi Scopus

2-s2.0-85149278352