Dr Cherith Semple Reader in Clinical Cancer Nursing

Transcription

1 Living and coping with head and neck cancer implications for practice Dr Cherith Semple Reader in Clinical Cancer Nursing ulster.ac.uk

2 Partnership post Current programmes of work Clinical questions Robust research Impact on CARE delivery Show me the evidence

3 Head and neck post-treatment QOL Cochrane review National survey : HCPs views on survivorship care QOL driven HNC follow-up clinic How can HNC patients posttreatment QOL be improved? PhD Testing posttreatment intervention Ongoing studies: Impact of dental loss How well does your obturator fit?

4 BACKGROUND: Patient s journey

5 Primary unique challenges of H&NC Location it s in your face Function it affects what I eat and how I speak

6 Despite an impressive list of advancements in medicine we cannot forget the other important needs of patients, in particular emotional wellbeing (Fallowfield, 1990) Must consider quality of life as well as quantity of life

7 Challenges of H&NC Is more than cure and survival Right treatment, for the right patient at the the right time!!

8 World Health Organisation Definition of QOL individuals perception of their position in life in the context of culture and value systems in which they live and in relation to their goals, expectations, standards and concerns KEY: Get to know your patient

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12 Patient journey J Ad Nursing ORIGINAL RESEARCH Changes and challenges to patients lifestyle patterns following treatment for head and neck cancer Cherith Jane Semple, Lynn Dunwoody, William George Kernohan, Eilis McCaughan & Kate Sullivan

13 Factors affecting QOL for patients with HNC Disfigurement Dysfunction of daily activities, e.g. eating and drinking PEG tubes speech Pain Shoulder dysfunction Occupation Sexuality Depression and anxiety Fatigue Employment

14 Disfigurement Enormous importance placed on the head and neck area People with facial disfigurement feel stigmatised in society

15 Disfigurement and adjustment caused by surgery or radiotherapy Most influential factor is not degree of disfigurement BUT Importance and meaning attributed to appearance Personality optimism Cognitive processes fear of being negatively viewed by others Preoperative expectations - regret Psychological distress, depression, anxiety Social support Age

16 Implications for practice While in hospital View the face and neck (to include oral cavity) - begins the process of understanding how appearance has changed - charting progress - integrating this change into their internalised body image Encourage and facilitate self-care routines shaving, brushing hair etc. Social interaction Post-operatively Information and support Normalise not to keep life on hold Social skills training Assess level of distress may require input from psychological services (CBT) Surgical interventions

17 Eating and swallowing difficulties Causes: Mucosal and soft tissue loss / damage Fibrosis Lymphoedema Trismus Dentition Mucositis Xerostomia

18 Eating & swallowing Many patients with intraoral reconstruction require a modified diet - 72% of patients with cancer to their oropharynx required a modified diet Inhibits normal socialisation social embarrassment - 67% feelings of shame while eating - 25% would not eat out following treatment Correlation between eating and QOL Trial and error Person-centred approach dietetic input Long-term feeding tube very poor predictor of QOL

19 Xerostomia: Physiological Impact Impaired lubrication of oral tissues Impaired food bolus preparation Buffering capacity compromised dental caries Oral flora become more pathogenic Demineralization of teeth and tooth decay Periodontal disease can accelerate Poor quality of sleep increased risk of candidacies

20 Dental caries, fractures and chipping Leads to dental loss Dental loss leads to: - altered dietary intake - altered speech - altered appearance - social embarrassment - reduced intimacy

21 Management may include: More frequent visits to the dentist Treatment of secondary infection Smoking cessation advice Adequate hydration/lubricants Products with fluoride Stimulants: chewing gum/sugar free sweets Humidification during sleep

22 Sexual functioning Sexual dysfunction is common in patients with head and neck cancer prevalence 33-50% Due to - altered appearance - dry mouth (xerostomia) - coughing and mucus - fear of failure - unwilling partner - fatigue - pain - HPV LIMITED evidence: some pointing to psycho-educational interventions targeting patients along with their partners - element of sexual counselling or therapy

23 ORN - Insufficient mandible

24 I become a bit of a recluse, if I didn t have to go out I didn't. because of the fistula, the ooze out of your face, you didn t feel nice Eating was something you didn t want to do.it was a force feeding job, not to be looked forward to. Trying to communicate with my own daughter was a problem, even trying to read a bedtime story. She knew I was different form other people and would say daddy your face isn t right, everyone stares at you, things like that hurt.

25 Free osteocutaneous fibular reconstruction

26 No requirement for opioids Improved self-esteem Positive engagement Less social embarrassment Change in activities with 8 yr old daughter

27 It has changed my life 100%, it has made a fantastic difference, the biggest thing is no pain, eating has become a pleasure instead of a miserable experience and I m more confident socially.

28 Pain Can occur as a consequence of the disease or from the treatment Often associated with recurrence Augmented because of the vital functions within the head and neck area 48% of patients had pain at diagnosis, 25% and 26% at 6 and 12 months Higher levels of pain - associated with depression and poorer QOL

29 Employment issues Returning to the usual place of work can pose some difficulty 70% of laryngectomies were employed at time of diagnosis compared to 34% afterwards Other studies demonstrated that patients may need to find alternative employment, reduce working hours

30 Research routine review clinic Simply doing the same will not deliver the improvements that our cancer survivors expect NOR will be affordable for the NHS

31 Head and neck post-treatment QOL Cochrane review National survey : HCPs views on survivorship care QOL driven HNC follow-up clinic How can HNC patients posttreatment QOL be improved? PhD Testing posttreatment intervention

32 During HNC follow-up care 74% patients had at least one unmet need (Wells et al 2015) 68% unmet post-treatment needs many psychological in nature (Henry et al 2014) Range of variables that can impact an individual s situation

33 AIM Develop a holistic surgical head and neck cancer follow-up clinic, through personalised identification and prioritisation of posttreatment concerns and issues, on a touchscreen computer, to promote patient empowerment and enablement

34 Baseline Consultation in usual format End of clinic visit: UWQOLv4 PCI Exit interview PCC Patient enablement instrument Study Design Non randomised Pre-test post-test Intervention Before consultation completion of: UWQOLv4 PCI Information from UWQOLv4 & PCI used to focus consultation Following consultation: Exit interview PCC Patient enablement instrument Patient satisfaction on new model of follow-up End of study One-to-one, semi-structured interview with clinical team

35 Patient confirmation

36 Raymond s story

37 UWQOL v 4 head and neck specific

38 Patient Concerns Checklist

39 Summary

40 INTERVENTION Education on signs and symptoms of recurrence Empower patients to develop confidence and skills for selfmanagement, allowing for selfreferral or rapid access Self-assessment tools (PCI and UWQOL v 4) on touchscreen Patient focused - No decision without me or about me

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42 Patients perception of topics discussed on PCC during baseline and intervention follow-up visits (n=44) Topics discussed 0 (no) PCC item score 1 (unsure) 2 (yes) P value* Total PCC item score Overall QOL Day-to-day activities Work Emotions Baseline Intervention Baseline Intervention Baseline Intervention Baseline Intervention HN symptoms Baseline Intervention Side-effects treatment Baseline Intervention Chronic non-specific Impact of illness Baseline Intervention Baseline Intervention *McNemar-Bowker test

43 PEI scores at baseline and intervention post-treatment visits n=44 PEI items 0 (same or less) PEI item score 1 (better/more) 2 (much better/more) P value* Total PEI item score Coping with life Baseline Intervention Understand illness Baseline Intervention Cope with illness Baseline Intervention Keep healthy Baseline Intervention Confident about health Baseline Intervention Able to help yourself Baseline Intervention *McNemar-Bowker test

44 Patient satisfaction survey (n=44) 5-point Likert scale 91% - definitely satisfied with completing questions on a touchscreen computer as part of routine follow-up 91% - considered the intervention helpful 87% - items on the UWQOLv4 and PCI were appropriate to be used as communication prompt aids at routine follow-up 96% - reported that items on UWQOLv4 and PCI items didn t lead to distress 89% - definitely had adequate information on self-surveillance

45 Clinicians - provided greater ownership and control to patients New information acquired despite the clinical team knowing the patients well Broader range of topics discussed during consultation Initiated onward referrals to members of MDT Accurate and consistent with the clinical assessment Identified patient priorities & concerns surrounding what matters to them Holistic approach to post-treatment management Promotion of self-management

46 What matters most?

47 Key findings QOL questionnaire and question prompt list facilitate the identification of unmet needs Permit timely and appropriate intervention being initiated Feasible to use in routine clinical practice

48 Family-centred Cancer Care Dr C Semple & Prof E McCaughan E-learning module Fatherhood & cancer Evaluation of Family Support Service Face-to-face education sessions & roll-out of CLIMB Emotional struggles of younger cancer patients Impact of HN parental cancer

49 Change in epidemiology Increase in the incidence of H&NC for men and woman in their 30 s, 40s and 50s e.g. oral cancer has doubled in the past three decades from 3.6 to 8.5 per 100,000 for men aged 40 49

50 Family-centred Cancer Care Dr C Semple & Prof E McCaughan E-learning module Fatherhood & cancer Evaluation of Family Support Service Face-to-face education sessions & roll-out of CLIMB Emotional struggles of younger cancer patients Impact of parental cancer

51 Experience of parents diagnosed with HNC who are caring for young children Dr Cherith Semple & Prof Tanya McCance Literature review: Keywords: parent, cancer, communication, parenting 13 studies focused on parents experience of cancer who have young children 3 predominant themes o being a good parent o o maintaining routine at home telling the children Notable gaps in the literature: studies mainly focused on woman

52 IMPACT of HEAD & NECK CANCER on FAMILY LIFE At Diagnosis During Treatment Living with Cancer Telling the children fear of Fear of Death and missing milestones Effects of Hospital stay Effect of Treatment On family life Changing roles Re-establishing Routine family life Appreciati on of life Living with uncertainty Support networks for the parents MINIMISING DISRUPTION to FAMILY LIFE

53 At diagnosis Fear of death & missing milestones I didn t know what to do, all I could think of was death... I just though my children; I m never going to see them grow up Fear of telling the children Well the initial feeling was total shock, this isn t happening to me. Yes, yea em it wasn t till I was half way through the journey home that I was thinking well how am I going to tell the children. (P1)

54 Telling the children about their HNC CHALLENGING Dealing with their own emotions Guilt and concern - how their diagnosis would impact the children Wanted to protect the children acutely aware that their children were perceptive of changes at home hospital visits change of emotions visible nature of the cancer Numerous decision when, how much information Lack of instructive support from professionals

55 Challenges confronting families Communicating with the children about cancer - children's perspective Data collection: semi-structured interviews and drawings Key findings: Sensed something was wrong at home Desire for information, include ongoing updates Viewed cancer as a serious condition

56 Effects of cancer treatment - children's reflections Sick in bed Need for medicine

57 Misconceptions Contagious It s a bit stupid but I used to think that you could catch cancer Blamed themselves I thought it was my fault..by being annoying sometimes

58 Education for frontline oncology staff PARENTS PROFESSIONALS Overwhelming consensus of lack of support DESPITE desire and need Lack of skill and competence Targeted education important role in psychological resilience and positive coping Developed a face-to-face education session: AIM: HCP to empower parents with cancer to support their children

59 Family-centred Cancer Care Dr C Semple & Prof E McCaughan E-learning module Fatherhood & cancer Evaluation of Family Support Service Face-to-face education sessions & roll-out of CLIMB Emotional struggles of younger cancer patients Impact of parental cancer

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65 In conclusion Remember we treat people, not a collection of parts