Psiconcologia e Riabilitazione SERVIZIO SANITARIO REGIONALE EMILIA-ROMAGNA Azienda Sanitaria Locale di Ferrara Psiconcologia e Riabilitazione Luigi Grassi Sezione di Psichiatria, Università di Ferrara U.O. Clinica Psichiatrica / Emergenza - Urgenza Dipartimento Assistenziale Integrato di Salute Mentale e Dipendenze Patologiche AUSL di Ferrara

I Punti Il trauma da cancro e la riabilitazione La morbilità psicosociale e lo screening L’area negletta della sessualità Le necessità di migliorare le linee-guida su quest area

Il trauma legato alle patologie tumorali Sintomi fisici Immagine corporea Performance Famiglia QoL CANCRO Relazioni Interpersonali Aspetti Psicologici Lavoro Spiritualità

Il trauma legato alle patologie tumorali [Sumalla et al., Clin Psychol Rev, 2009]

La Traiettoria della Malattia

Crescita Post-Traumatica

Crescita Post-Traumatica Stephen Z. Levine, Avital Laufer, Einat Stein, Yaira Hamama-Raz, Zahava Solomon Broad cluster of personal characteristics that facilitate the ability to manage despite trauma (hardiness, optimism, self-enhancement, adaptive coping, positive affect, sense of coherence) Only occurs if trauma has been upsetting enough to drive the survivor to (positive) meaning-making of the negative event (changes in self, interpersonal ties, spirituality, values of life)

Supporto Sociale e PTG Regression analyses showed that getting support from family and friends, characterized by reassuring, comforting, and problem-solving at 3 months after diagnosis significantly predicted a greater perception of positive consequences of the illness at 8 years after diagnosis, helping cancer survivors to find positive meaning in their cancer experience.

Il ruolo dell’esercizio fisico 34-41

Il ruolo dell’esercizio fisico

Supporto Psicosociale High satisfaction with the individual psychosocial support intervention they received, irrespective of which profession provided the support Pts in INS (specially trained oncology nurses) group  higher levels of benefit regarding disease-related problems, than “psychologists” group

Componenti del supporto fonte di aiuto Comunicazioen efficace Informazione parametrata sui bisogni della persona e sul contesto Supporto emozionale Assistenza pratica Continuità terapeutica Identificazione e appropriata risposta a preoccupazioni specifiche The Clinical Practice Guidelines for the Psychosocial Care of Adults with Cancer were developed by the National Cancer Control Initiative and the National Breast Cancer Centre, funded by the Commonwealth Department of Health and Ageing. The guidelines summarise the best available evidence about the emotional impact of cancer, and provide recommendations to guide clinical care. The guidelines can be accessed free of charge on: http://www.nhmrc.gov.au/publications/synopses/cp90syn.htm Key evidence presented in the guidelines includes: Expressing empathy and actively listening to patients with cancer improves psychological adjustment Provision of appropriate information promotes understanding and increases the psychological well-being of patients with cancer Providing patients with information about the procedure they are about to undergo reduces emotional distress and improves psychological and physical recovery Participation in psycho-educational programmes decreases anxiety and depression and increases knowledge Peer support programmes benefit patients who have poor perceived social support Appropriate counselling improves the well-being of people with cancer A variety of psychological interventions including cognitive, behavioural, supportive, group, family and couples therapy, as well as relaxation therapy reduce psychological distress [Clinical Practice Guidelines for the Psychosocial Care of Adults with Cancer 2003]

Psychosocial Cancer Care Psychosocial assessment is an essential component of cancer care and part of the oncology nurse's role in delivering quality cancer care. Oncology nurses, advocacy organizations, and others inform patients that they should expect, and request when necessary, cancer care that includes a range of psychosocial services such as counseling, education, self-care programs, and support groups. www.ons.org

Psychosocial Cancer Care Oncology nurses incorporate existing evidence-based psychosocial assessments, interventions, and resources into practice, such as those that are available from the ONS and other nursing and healthcare organizations. Standard-setting organizations create oversight mechanisms to ensure that psychosocial care and services are being delivered to patients with cancer throughout the care continuum. www.ons.org

La Traiettoria della Malattia

Morbilità Psicosociale Prevalenza (DSM-ICD)  30-35% + condizioni psicosociali rilevanti (ansia per la salute, demoralizzazione)  25% (DCPR) 1 Conseguenze negative per paziente /famiglia QoL Tempi riabilitazione Aderenza ai trattamenti Sopravvivenza Prevalence estimates for anxiety in patients with cancer range from 15% to 23%, while PTSD varies from 3% to 12%, depending on the cancer and treatment. Most studies show prevalence rates for depression ranging from 20%-35% 1 Fava et al., Psyhcother Psychosom, 1995

Psychological Sequelae 791 long-survivors testicular cancer Chronic fatigue 16% vs 24% (Hodgkin Lymphoma – LH) vs 10% (general populatongenerale – GP) Anxiety (HADS) comparable to a LH and higher than GP Depression (HAD-S) lower than LH and comparable to GP Chronic Fatigue associated with anxiety, depression and young age at diagnosis [Fossa et al., JCO, 2003]

Psychological Sequelae Cancer and Leukemia Group B Study 153 long-survivors (20 years) Breast cancer Symptoms/syndromes associated with Stressfule events Poor social support [Kornblith et al., Cancer, 2003]

Psychological Sequelae 1,083 breast cancer survivors (mean - 47 months after diagnosis) 38% moderate to high anxiety, 22% had moderate to high depression; PTSD 12%; overall psychological comorbidity 43% and 26% for a possible and probable psychiatric disorder. Lower QOL and higher levels of anxiety in cancer survivors compared to age-adjusted normative comparison groups Disease progress, detrimental interactions, less social support, a lower educational level, and younger age were predictors of psychological comorbidity Participation in cancer rehabilitation 57%; other psychosocial support programs 24% Insufficiently informed about support offers 46%

Psychological Sequelae Significant correlations between FoP and intrusive thoughts, avoidance, hyperarousal and posttraumatic stress disorder diagnosis). Factors significantly associated with moderate and high FoP included a depressive coping style, intrusion, avoidance and hyperarousal symptoms

NCCN Distress Management Guidelines

Mild to Moderate distress Minimal to Mild distress Tiered Model of Care Acute Care: Intensive or comprehensive therapy for acute and complex problems eg. mental health team, psychiatrist. Severe distress Specialist Care: Specialised therapy for depression, anxiety, relationship problems eg. psychologist, psychiatrist. Moderate to severe distress Extended Care: Counselling, time limited therapy, skills training eg. psychologist, social work, QCF tele-based Cancer Counselling Service, chaplain. Moderate distress Supportive Care: Emotional, practical, spiritual, psychoeducation, decision support, peer support eg. social worker, peers, chaplain, Cancer Helpline. Cancer is a major life stress, however over time most people diagnosed with cancer go on to adjust effectively to their changed life circumstances without clinical intervention. At the other extreme, a person may become severely depressed and suicidal. When thinking about helping patients with cancer it is important to think about what each person needs, and balance the needs of that person with the services and supports that are available. Hence the most effective way to provide care is to systemically refer patients to the type of service that would be expected to most closely match their needs. The tiered model of care outlined here is based on the idea of matching the patient’s or family member’s level of distress and expressed need to an appropriate level of psychosocial care. You can see five levels of care here matched to need. Universal Care is standard care and should be offered to all patients with cancer. This level of care includes: provision of cancer-related information; brief support from a health care professional in the treatment team, or cancer-related telephone helpline; and information-focussed interventions such as patient education. These all provide a generic level of care likely to be of benefit for anyone affected by cancer. Supportive care, the next level in this tiered model includes Psycho-educational interventions, in either individual or group format. Education about topics such as coping with cancer and its treatments, decision support or navigating the health system might be included. Similarly, Supportive Care includes emotional support provided by a trained peer volunteer or a peer-led support group. Mild to Moderate distress Universal Care: Information, brief emotional and practical support eg. health care team, QCF Cancer Helpline. Minimal to Mild distress [Hutchison et al., PO, 2006]

Need for Education: Screening Programs Distress Screening Program in Ambulatory Care (DISPAC program)

[Shimizu et al., Psycho-Oncology 2009] Need for Education: Screening Programs (cont’d) 491 patients treated during the DISPAC period: 91.9% (451/491) completed the DIT (132 ± 75 seconds) “Cases” 37.0% (167/451) Recommendations for referrals given to 93.4% (156/167) Acceptance of referral = 25% (39/156) Proportion of targeted pts w/ MD or AD treated by PO service higher than during the usual care period (5.3% vs 0.3%) (p<0.001) [Shimizu et al., Psycho-Oncology 2009]

Barriers to Accessing Support Health professional barriers Although health care professionals are aware of support services, <60% feel these are helpful to patients Physicians express concerns about psychosocial support groups and potential for psychological damage Lack of training Concerns about time The professional barriers to accessing psychosocial support are complex. One key aspect is that traditional training for health professionals has tended to focus on biomedical issues with relatively less attention to psychosocial issues. As a consequence, many health professionals are unaware of the evidence supporting the benefits of psychosocial interventions, instead assuming that they are “soft” scientifically and lack evidence. Another factor is lack of communication skills training about how to introduce psychosocial issues – many health professionals avoid this type of discussion because they feel untrained and uncertain about how to proceed. This is a problem, as patients do not commonly volunteer psychosocial concerns, and they are further discouraged from doing so if the health professional does not raise these issues – in effect patients tend to “mirror” the approach of a doctor or nurse, so will adopt the biomedical lead that the health professional sets. Most oncology settings are busy places and there is considerable pressure to provide services to large numbers of patients with complex problems. Many health professionals feel concerned that if they raise psychosocial issues the patient will lose emotional control and the consultation will be extended, causing chaos in the clinic. Research does not support this, and consultations in which the patient’s emotional needs are addressed are only a few seconds longer than those in which they are not. Some health professionals also feel that attention to psychosocial issues is not their job, but the evidence is that patients desire an inclusive approach which acknowledges the emotional dimensions of their experience, and look to members of their clinical team to provide emotional support. [Del-Guidice et al 1997; Matthews et al 2002]

Barriers to Accessing Support Patient Barriers Almost half of distressed patients had not sought professional psychosocial support nor did they intend to do so in the future Even when services are offered, they are refused in 38% of cases: Lack of awareness of the benefits of psychosocial interventions Stigma - young people use a vocabulary of 270 different words and phrases to describe people with mental illness – most are derogatory Many patients with cancer feel that they need to be strong and positive to survive the cancer, and they may experience considerable pressure from family and friends to cope in this way. The person who feels distressed then finds it very difficult to talk about their concerns with health professionals, as they feel concerned that this distress might affect their prognosis. There is no convincing evidence that being positive influences survival, and indeed there is evidence that talking about feelings, even the distressing ones, generally helps people to cope. In the community there is considerable stigma about mental illness, and a lack of understanding about the scientific evidence about the effectiveness of psychosocial treatments. The Clinical Practice Guidelines for the Psychosocial Care of Adults with Cancer provides recommendations about ways of facilitating referral, in Appendix G, commencing on page 149. In particular it can be useful to make comparisons with physical conditions: “If you had a broken leg you wouldn’t expect to be able to fix it yourself – you would seek expert advise and care. Just because we can’t see the problem it is no less real or deserving of treatment” “Having cancer is tough enough, but coping with depression as well is really difficult. It is important to look at helping emotionally as well as physically to ensure that you have the best possible quality of life” [Carlson et al 2004; Curry et al 2002; Jorm 2000; Pinfold et al 2003]

La sessualità World Health Organization: sexuality is a central aspect of human being throughout life and encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy, and reproduction Sexuality: as the process of giving and receiving sexual pleasure associated with a sense of belonging or being accepted by another. Intimacy: as the sharing of identity, closeness, and reciprocal rapport, more closely linked to communication issues rather than sexual function [Hughes, 2000; Shell, 2008]

I disturbi della sessualità Disturbi del desiderio sessuale diminuzione o perdita del desiderio sessuale evitamento della sessualità Disturbi dell'eccitamento sessuale difetto della risposta genitale femminile (diminuzione o perdita della lubrificazione) difetto della risposta genitale maschile (impotenza e disturbo dell'erezione) Disturbi dell'orgasmo inibizioni dell'orgasmo maschile e femminile eiaculazione precoce Disturbi da dolore sessuale vaginismo e dispareunia

Disturbi Sessuali nella popolazione 43% donne e 31% uomini Problemi più frequenti nelle donne 33.4% perdita di interesse sessuale 24.1% incapacità di raggiungere l’orgasmo 21.2% diminuzione piacere sessuale 18.8% difficoltà nel rapporto sessuale 14.4% rapporti sessuali dolorosi It is important to compare the sexual health and functioning of patients with cancer to that of the general population. Sexual problems are common, even among community samples of happily married couples. In a large and extensive national survey of sexuality of 18- to 59-year-olds in the U.S., 43% of women and 31% of men reported dysfunction in one of the diagnostic categories during the past year. Women report problems involving all three phases of the triphasic model. One-third of women experience a desire disorder characterized by a lack of interest in sex. One-quarter experience an orgasmic disorder and one-fifth an arousal disorder. Pain during intercourse is common as well. Laumann EO, Paik A, Rosen RC: Sexual dysfunction in the U.S.: Prevalence and predictors. JAMA 1999;281:537-544. [Laumann EO, Paik A, Rosen RC: JAMA 1999;281:537-544]

Disturbi Sessuali nella popolazione Problemi più frequenti negli uomini 28.5% eiaculazione precoce 17% ansia da prestazione 15.8% perdita di interesse sessuale 10.4% incapacità a mantenere l’erezione As with women, the most common sexual problems reported in men include complaints in all three phases of the triphasic model. The most common orgasmic disorder is premature ejaculation, while anxiety about performance and lack of interest in sex are common desire disorders. Given the frequency with which sexual problems occur in people without specific health problems, it should not be surprising that these problems might continue or be exacerbated after a diagnosis of cancer. Laumann EO, Paik A, Rosen RC: Sexual dysfunction in the U.S.: Prevalence and predictors. JAMA 1999;281:537-544.   [Laumann EO, Paik A, Rosen RC: JAMA 1999;281:537-544]

Fattori che interferiscono sulla sessualità Fattori di Base Fatori demografici: ad es. età, sesso, fattori etnici Fattori psicologici: ad es. ansia, depressione, immagine corporea Problemi di salute cronica: ad es. diabete, patologie cardiache Fattori relazionali: qualità del rapporto col partner Fattori legati all’età: ad es. scarsa lubrificazone vaginale, disfunzione erettile

Cancro e sessualità Neoplasie prostatiche Neoplasie del testicolo Disfunzione erettile (85%) Problemi di riduzione o assenza di orgasmo, riduzione rigidità erettile. Climacturia Neoplasie del testicolo Perdita del desiderio (20%), disfunzione erettile (11.5%), disturbo dell’orgasmo (20%) e dell’eiaculazione (44%), diminuzione dell’ attività sessuale (44%), e del piacere sessuale (19%)

Cancro e sessualità Neoplasie mammella Neoplasie utero Neoplasie ovaio Problemi di lubrificazione vaginale Diminuzione attività sessuale e problemi di eccitazione Neoplasie utero Neoplasie ovaio Problemi sessuali (60%)

Cancro e sessualità Neoplasie testa-collo Neoplasie apparato gastro-enterico Neopalsie eaotlogiche Neoplasie vescica Nopalsie polmone

Fattori che interferiscono sulla sessualità Dopo la diagnosi di cancro Fattori demografici: non modificati Fattori psicologici: non modificati, migliorati, peggiorati Problemi di salute cronica: non modificati, peggiorati Fattori realzioniali: non modificati, migliorati, peggiorati Fattori legati al tumore: menopausa indotta, immagine corporea, disfunzione erettile

Cancro e sessualità

Cancro e sessualità

Riabilitazione Psicosociale 5-6 group meetings (multidisciplinary) Information and education on cancer and long-term consequences Awareness about stress and stress response and ways to manage them Maladaptive vs adpative coping: how to shift Relaxation exercises and problem solving skills [Fawzy & Fawzy, 1992]

Riabilitazione Psicosociale

6 week group psychoeducational intervention Target: breast cancer survivors with significant problems associated with partner relationship, body image, or sexual functioning 6 week group psychoeducational intervention Outcomes: emotional functioning and partner communication No impact on emotional functioning Improvement noted in relationship adjustment, communication and satisfaction with sexual activity

Psychosocial Cancer Care “Today, it is not possible to deliver good-quality cancer care without addressing patients’ psychosocial health needs and every individual treated for cancer can (and should expect to) have their psychological and social needs addressed alongside their physical needs” The reports and guidelines recommend the actions that health providers should undertake to ensure that this standard is met.  

Piano Oncologico Nazionale 2010-2012

Grazie per l’attenzione Sebastiano Filippi (Bastianino) Visitazione (1568) Pinacoteca Nazionale, Ferrara