Better Communication for Better Management of Persons with Hemophilia: Results from a Patients’-Clinicians’ Project to Address the New Therapeutic Landscape
Abstract
:1. Introduction
2. Materials and Methods
2.1. Material Development and Study Deployment
2.2. Statistical Analysis
3. Results
3.1. Study Population
3.2. Common Priorities during Visits among All Responders
- i.
- non-medical related items;
- ii.
- everyday life issues (i.e., work-related);
- iii.
- life-style;
- iv.
- patients’ ambitions regarding life;
- v.
- how the distance between home and reference center may impact follow-up;
- vi.
- alternative, non-conventional and modern communication modalities with physicians (messages, teleconsulting, videoconference, etc.) in a non-emergency setting;
- vii.
- the achievable level of self-care and autonomy in the fulfilment of regular daily life activities and possible need of support based on age and/or joint damage;
- viii.
- patient’s adherence to physician’s non-pharmacological indications; the potential challenges in following them and the reasons beyond these difficulties.
- i.
- the fear of potential bleeding events;
- ii.
- the level of acute and chronic pain with particular regard to their management;
- iii.
- the level of joint damage with particular regard to its management, impact on daily life and on activities desired by the patients.
- i.
- importance of comorbidities and their possible interaction with treatments potentially needed;
- ii.
- pros and cons of different routes of administration available for hemophilia treatments;
- iii.
- central role of the patient regarding disease management, especially related to available therapies (efficacy/tolerability, route of administration, pharmacokinetics parameters) and self-management;
- iv.
- disease- and treatment-related limitations in every-day life activities (i.e., frequency of treatment, route of administration, logistic related to drugs transportation/conservation, etc.).
- i.
- the possibility to discuss hemophilia and its management with a multidisciplinary team;
- ii.
- the possible psychological issues related to potential disease-related critical situations and their management within a multidisciplinary team;
- iii.
- the possible psychological issues related to daily-life disease management or the need to deal with a disease day-by-day within a multidisciplinary team.
- i.
- its duration, regarding which both physicians and caregivers reported uncertainty on the appropriateness of the available time, with patients, on the other hand deeming it appropriate (Table 1);
- ii.
- disease and non-disease related discussion regarding the PwH’s social networks, group supports, relationship with relatives and friends;
- iii.
- for pediatric patients, the need/possibility of a direct dialogue between the patient and the physician without the presence of a caregiver/relative.
3.3. Principal Component Analysis (PCA)
- i.
- all the medical aspects related to symptoms, life-limitations, pain, etc.;
- ii.
- non-medical related aspects (ambitions, lifestyle, social networks, etc.);
- iii.
- logistic-organizational aspects (home–hospital distance, alternative modalities of communication);
- iv.
- visit duration and telemedicine integration.
- Having time to talk about the most frequent and relevant symptoms: this attribute refers to the possibility of talking about all the clinical aspects that pertain to hemophilia.
- Having time to talk about therapy management: in this case, the reference is to currently available therapies, including the one currently in use and others that could be employed.
- Having time to talk about limitations and autonomy in daily activities: this refers to normal activities that are part of everyday life such as grocery shopping, doing housework, etc.
- Healthcare professionals to refer to: hemophilia management requires a multidisciplinary approach, based on the expertise of several specialists. This attribute provides the possibility of consulting solely the hematologist, the hematologist and the psychologist, or a multidisciplinary team that includes, in addition to the hematologist, the physiatrist, the orthopedic surgeon, and potentially other figures who could be crucial in the clinical management of the pathology, taking into account the patient’s age.
- Conducting visits: for a chronic condition, beyond the standard face-to-face visit, as typically conducted, a visit could be facilitated with the aid of IT tools.
- Distance from the hemophilia treatment center (HTC): it is described based on the time required to reach the center from the patients’ home.
- Having time to talk about social relationships, personal ambitions, lifestyle, and emotional aspects.
- Having time to deal with co-morbidities and drug interactions: this attribute mainly refers to patients who have other diseases in addition to hemophilia and who are therefore treated with other drugs (e.g., antihypertensives, antidiabetics, etc.).
- Having time to talk about research and pharmacological innovations: this item pertains to the discussion about new drugs in clinical trials including the possibility to be involved in clinical trials.
- Time of the visit: the three intervals proposed are indicative of a short or unsatisfactory visit (15 min), medium or normal (30 min) and long or more thorough (45 min).
4. Discussion
- i.
- Recent progress in therapeutic options led to a paradigm shift in PwH management;
- ii.
- As condition outcomes have improved over the past decades, patients, physicians and caregivers deem everyday life-related issues as increasingly important topics to be discussed during routine visit;
- iii.
- QoL has become a crucial priority for the PwH community;
- iv.
- Non-disease and non-treatment related issues should be routinely discussed during follow-up visits.
Limitations
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Question | Group | Median (Round) | IQR | IPRAS | Evaluation |
---|---|---|---|---|---|
1. The amount of time the doctor has available for routine visits is sufficient. | 1.clinicians | 5 | 3 | 2.35 | uncertain |
2.patients | 7 | 2 | 5.35 | appropriate | |
3.caregivers | 6 | 2 | 3.85 | uncertain | |
2. During the routine visit, it would be important to have time to talk about ‘other things’. | 1.clinicians | 8 | 2 | 6.85 | appropriate |
2.patients | 7 | 2.5 | 5.35 | appropriate | |
3.caregivers | 8 | 3.25 | 6.775 | appropriate | |
3. During the routine visit, it is important to discuss (pathology-related and non-pathology-related) issues regarding daily activities (e.g., work, everyday life). | 1.clinicians | 9 | 2 | 7.6 | appropriate |
2.patients | 8 | 2 | 6.1 | appropriate | |
3.caregivers | 8 | 4 | 6.025 | appropriate | |
4. During the routine hematological examination it is important to discuss (pathology-related and non-pathology-related) questions regarding one’s ambitions. | 1.clinicians | 8 | 2 | 6.85 | appropriate |
2.patients | 7 | 3 | 4.6 | appropriate | |
3.caregivers | 8 | 4 | 4.675 | appropriate | |
5. During the routine hematological examination it is important to discuss (pathology-related and non-pathology-related) lifestyle issues. | 1.clinicians | 9 | 1 | 7.6 | appropriate |
2.patients | 8 | 2 | 6.1 | appropriate | |
3.caregivers | 8 | 2 | 5.35 | appropriate | |
6. During the routine hematological examination it is important to discuss (pathology-related and non-pathology-related) issues regarding social networks, circles of acquaintances and support groups. | 1.clinicians | 7 | 2 | 6.1 | appropriate |
2.patients | 6 | 4 | 4.6 | uncertain | |
3.caregivers | 7 | 3 | 4.6 | appropriate | |
7. It is important that, during routine visits for pediatric patients, there is a moment for direct doctor–patient dialogue without the continuous presence of the parent/caregiver. | 1.clinicians | 8 | 2 | 6.85 | appropriate |
2.patients | 8 | 2.5 | 6.85 | appropriate | |
3.caregivers | 7 | 3 | 4.6 | appropriate | |
8. It is important to talk about the potential fear of bleeding events. | 1.clinicians | 8 | 1 | 7.6 | appropriate |
2.patients | 8 | 2 | 6.85 | appropriate | |
3.caregivers | 8 | 3 | 6.85 | appropriate | |
9. For ‘elderly’ patients, it is important to discuss clinical aspects related to advancing age (comorbidities) and possible interactions of the treatment of the condition and the condition itself with other pharmacological treatments. | 1.clinicians | 9 | 1 | 7.6 | appropriate |
2.patients | 8 | 1 | 7.6 | appropriate | |
3.caregivers | 8 | 3 | 6.55 | appropriate | |
10. It is important to discuss the route of administration, including the pros and cons of current treatment and potential alternative options. | 1.clinicians | 9 | 1 | 7.6 | appropriate |
2.patients | 9 | 1 | 7.6 | appropriate | |
3.caregivers | 8 | 2.5 | 6.85 | appropriate | |
11. The distance home–center has an impact on disease management. | 1.clinicians | 7 | 2 | 5.35 | appropriate |
2.patients | 8 | 4 | 6.4 | appropriate | |
3.caregivers | 7 | 3 | 6.1 | appropriate | |
12. Alternative modes of dialogue with the physician (messaging, teleconsultation, videoconferencing, etc.) may be a viable option to add flexibility, under non-emergency conditions, to the frequency of visits/contacts with the center. | 1.clinicians | 7 | 1 | 6.1 | appropriate |
2.patients | 8 | 2 | 6.85 | appropriate | |
3.caregivers | 8 | 2 | 6.85 | appropriate | |
13. In decisions about therapy and disease management, the role of the patient is fundamental, specifically in relation to available therapies including pharmacological characteristics (efficacy/tolerability, route of administration, pharmacokinetic parameters, etc.) and autonomy in management. | 1.clinicians | 8 | 2 | 6.1 | appropriate |
2.patients | 8 | 2 | 7.6 | appropriate | |
3.caregivers | 8 | 2.5 | 6.85 | appropriate | |
14. In decisions about therapy and disease management, the role of the patient is crucial, specifically in relation to satisfaction with current treatment. | 1.clinicians | 8 | 2 | 6.85 | appropriate |
2.patients | 9 | 2 | 7.6 | appropriate | |
3.caregivers | 9 | 2 | 6.85 | appropriate | |
15. It is important to discuss with the physician the limitations that pathology and therapy impose on everyday life (e.g., frequency, route of administration, logistics of transporting/storing/obtaining treatment, etc.). | 1.clinicians | 9 | 1 | 7.6 | appropriate |
2.patients | 8 | 1 | 7.6 | appropriate | |
3.caregivers | 8 | 2 | 7.6 | appropriate | |
16. It is important to be able to discuss as part of the routine visit the possibility and availability of access to a multidisciplinary team consisting of other hematologists and/or specialists with specific expertise in hemophilia. | 1.clinicians | 9 | 1 | 7.6 | appropriate |
2.patients | 8 | 2 | 7.6 | appropriate | |
3.caregivers | 9 | 2 | 6.85 | appropriate | |
17. It is important to discuss the level of chronic pain (or acute pain in relation to hemorrhagic events), its importance and its management. | 1.clinicians | 9 | 1 | 8.35 | appropriate |
2.patients | 9 | 1 | 7.6 | appropriate | |
3.caregivers | 8 | 3 | 6.85 | appropriate | |
18. It is important to discuss the level of joint damage, its management, implications for daily life and desired activities. | 1.clinicians | 9 | 1 | 8.125 | appropriate |
2.patients | 9 | 1 | 7.6 | appropriate | |
3.caregivers | 9 | 1 | 7.6 | appropriate | |
19. It is important to discuss during the visit the level of self-sufficiency and autonomy in performing normal daily activities and the possible need for support depending on the level of joint damage and age. | 1.clinicians | 9 | 1 | 7.6 | appropriate |
2.patients | 9 | 1 | 7.6 | appropriate | |
3.caregivers | 8 | 3 | 6.1 | appropriate | |
20. It is important to discuss the patient’s adherence to the doctor’s instructions (excluding drug therapy), potential difficulties in following them and the reasons for these difficulties. | 1.clinicians | 9 | 1 | 8.35 | appropriate |
2.patients | 9 | 2 | 7.6 | appropriate | |
3.caregivers | 9 | 3 | 6.85 | appropriate | |
21. It is important, during the routine visit, to discuss any psychological distress related to critical situations and possible management within a multidisciplinary team or with external collaborators. | 1.clinicians | 9 | 1 | 7.6 | appropriate |
2.patients | 8 | 2 | 6.85 | appropriate | |
3.caregivers | 9 | 1 | 7.6 | appropriate | |
22. It is important, during the routine visit, to discuss any psychological discomfort related to the day-to-day management or living with the condition and possible management within a multidisciplinary team or with external collaborators. | 1.clinicians | 9 | 1 | 7.6 | appropriate |
2.patients | 8 | 2 | 6.85 | appropriate | |
3.caregivers | 9 | 1 | 7.6 | appropriate |
Varimax Rotated Component Matrix | Factors | |||
---|---|---|---|---|
1 | 2 | 3 | 4 | |
Explained variance | 43.3% | 11.1% | 5.6% | 5.1% |
Items | ||||
discuss pain management | 0.863 | |||
discuss management of joint damage | 0.846 | |||
discuss limitations from pathology and therapies | 0.845 | |||
multidisciplinary team | 0.794 | |||
modalities of treatment delivery | 0.786 | |||
discuss autonomy | 0.698 | |||
patient involvement in treatment choices | 0.693 | 0.457 | ||
discuss adherence | 0.692 | |||
consideration of patient satisfaction with therapies | 0.687 | |||
comorbidities | 0.67 | |||
fear of bleeding events | 0.645 | 0.458 | ||
discuss psychological aspects of critical | 0.493 | 0.475 | 0.447 | |
visits discuss ambitions | 0.82 | |||
visits discuss lifestyle | 0.807 | |||
visits discuss daily activities | 0.702 | |||
visits discuss social networks | 0.693 | |||
visits discuss other | 0.623 | |||
visits have doctor–pediatric–patient dialogue | 0.421 | 0.519 | ||
distance from home to center | 0.806 | |||
discuss psychological aspects of daily living | 0.482 | 0.54 | ||
time of visit | 0.77 | |||
alternative modes of communication | 0.456 | 0.514 |
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Banov, L.; Linari, S.; Ambroso, L.; Ferri Grazzi, E.; Gallo, S.; Pasqualetti, P.; Mancuso, M.E. Better Communication for Better Management of Persons with Hemophilia: Results from a Patients’-Clinicians’ Project to Address the New Therapeutic Landscape. J. Clin. Med. 2024, 13, 568. https://doi.org/10.3390/jcm13020568
Banov L, Linari S, Ambroso L, Ferri Grazzi E, Gallo S, Pasqualetti P, Mancuso ME. Better Communication for Better Management of Persons with Hemophilia: Results from a Patients’-Clinicians’ Project to Address the New Therapeutic Landscape. Journal of Clinical Medicine. 2024; 13(2):568. https://doi.org/10.3390/jcm13020568
Chicago/Turabian StyleBanov, Laura, Silvia Linari, Luigi Ambroso, Enrico Ferri Grazzi, Samanta Gallo, Patrizio Pasqualetti, and Maria Elisa Mancuso. 2024. "Better Communication for Better Management of Persons with Hemophilia: Results from a Patients’-Clinicians’ Project to Address the New Therapeutic Landscape" Journal of Clinical Medicine 13, no. 2: 568. https://doi.org/10.3390/jcm13020568