Supportive care and quality of life

Supportive care and quality of life and how it is different from palliative care

1. SUPPORTIVE CARE & QUALITY OF LIFE By Dr. Ayush Garg

2. SUPPORTIVE CARE According to the Multinational Association for Supportive Care in Cancer, supportive care is the prevention and management of the adverse effects of cancer and its treatment. This includes management of physical and psychological symptoms and side-effects across the continuum of the cancer experience from diagnosis through anticancer treatment to post-treatment care. Supportive care alleviates symptoms and complications of cancer, reduces or prevents toxic effects of treatment.

3. PALLIATIVE CARE Palliative care is an approach to patient/family/caregiver-centred health care that focuses on optimal management of pain and other distressing symptoms, while incorporating psychosocial and spiritual care according to patient/family needs, values, beliefs and cultures.

4. What is the difference between Supportive Care and Palliative Care???

5. When comparing the terms palliative and supportive care, Morstad et al found that the term palliative care evoked more negative emotions and was less favored by patients Supportive care is one means improving patients' quality of life. Supportive care includes symptom control, anti-infective measures, nutritional supplements and psychosocial support. In 2009, colleagues from the MD Anderson Cancer Center discussed that referrals to palliative care tended to occur late in the trajectory of illness. Palliative care becomes the main focus of care when disease directed, life prolonging therapies are not longer effective, appropriate or desired.

6. Advantages of Supportive Care Reduce polypharmacy Lessen drug side effects Produce pharmacoeconomic benefits

7. SYMPTOMS Routinely Discussed Pain Xerostomia Oral Mucositis Nausea & Vomiting Diarrhoea Acute Dermatitis Urinary Symptoms No Routinely Discussed Fatigue Mood Dysfunction Female Sexuality Male Sexuality Psychosocial Problems Nutrition

8. SYMPTOMS Routinely Discussed Pain Xerostomia Oral Mucositis Nausea & Vomiting Diarrhoea Acute Dermatitis Urinary Symptoms No Routinely Discussed Fatigue Mood Dysfunction Female Sexuality Male Sexuality Psychosocial Problems Nutrition

9. PAIN

10. Other Therapies Radiotherapy Psychosocial Counselling Cognitive/behavioral therapy Alternative Therapies Acupuncture Meditation/relaxation Guided imagery Herbal preparations Magnets Therapeutic massage

11. SYMPTOMS Routinely Discussed Pain Xerostomia Oral Mucositis Nausea & Vomiting Diarrhoea Acute Dermatitis Urinary Symptoms No Routinely Discussed Fatigue Mood Dysfunction Female Sexuality Male Sexuality Psychosocial Problems Nutrition

12. XEROSTOMIA THINGS I ALREADY KNOW It is the subjective experience of dry mouth 50% to 60% decrease in salivary flow occurs during the first week IMRT & IV Amifostine can be used for prevention Clinical Features: Loss of appetite Chronic esophagitis Gastroesophageal reflux Sleep disruption Dental caries Periodontal diseases Atrophy and ulceration of mucosa

13. Treatment Dietary and oral hygiene, saliva substitution, or stimulation of salivation by moistening agents or medications. Cold, tepid, soft food, and beverages are preferred. Hard, spicy foods should be avoided. Saliva Substitutes: Water Other types of mouthwash such as saline, bicarbonate or glycerol Artificial saliva agents: Carboxymethylcellulose Porcine Bovine mucin, or xanthan gum

14. Natural saliva can be achieved by stimulation with : Chewing gum Sucking ointment Sugarless candies Menthol acid Vitamin C Lozenges

15. THINGS I LEARNED Sialogogues (systemic salivary gland stimulants): Muscarinic agonists such as pilocarpine, bethanechol, carbachol. Other agents: neostigmine, physostigmine, nicotinic acid, potassium iodide, bromhexine (a mucolytic), and anethole trithione The most extensively studied is pilocarpine. Oral administration at 5 to 10 mg, 3 times daily, is the standard regimen. Several trials have shown clinical efficacy and safety of pilocarpine in treating radiation-induced Xerostomia

16. THINGS I LEARNED Acupuncture has been shown to stimulate saliva production. It even shows some benefit in pilocarpine-resistant xerostomia

17. Salivary gland transplantation In several studies, surgical transfer of submandibular glands into the submental space prior to radiation therapy resulted in prevention of xerostomia. A 2-year follow-up showed that 83% to 92% of patients reported no or minimal xerostomia.

18. Home Remedies Drink plenty of water Stop Medications Antihistamines Hormonal Medications Antihypertensives Bronchodilators Avoid Caffeine Stop Smoking and alcohol Avoid mouth breathing Aloe Vera Ginger Marshmallow Sweet Pepper Lemon Cardamom

19. SYMPTOMS Routinely Discussed Pain Xerostomia Oral Mucositis Nausea & Vomiting Diarrhoea Acute Dermatitis Urinary Symptoms No Routinely Discussed Fatigue Mood Dysfunction Female Sexuality Male Sexuality Psychosocial Problems Nutrition

20. MUCOSITIS THINGS I ALREADY KNOW When the injury occurs in nonoral alimentary tract mucosa, it presents as esophagitis, gastritis, enteritis, colitis, or proctitis. These injuries manifest as pain, dysphagia, odynophagia, nausea, vomiting, and diarrhea . Accelerated fractionation increases the risk. Topical benzydamine , a drug with anti-inflammatory, analgesic, and antimicrobial effects, reduces the frequency and severity of oral ulcers and pain. Protocols consisting of brushing, flossing, bland rinses, and moisturizers should be implemented for all patients

21. THINGS I LEARNED Midline mucosa-sparing blocks were shown to protect the aerodigestive tract and significantly reduce acute toxicity during RT for head and neck cancer without compromising tumor control. Another technique is three-dimensional treatment planning with conformational dose delivery. It reduces the volume of mucosa exposed to irradiation. Chlorhexidine should not be used to prevent oral mucositis. An interdisciplinary approach to oral care is preferred Nurse Physician Dentist Dental hygienist Dietician Pharmacist

22. New classes of agents are being investigated: Recombinant human keratinocyte growth factor-1 (rhuKGF-1, palifermin) Epidermal growth factor, Transforming growth factor-β, Glucagon-like peptide-2, Lactoferrin, Anti-inflammatory amino acid decapeptide, Recombinant human interleukin-11, and Insulin-like growth factor-1. Natural product and dietary supplements such as: Glutamine, PV701 (milk-derived protein extract), Several vitamins (A, B12, E), Folate, Aloe vera (a plant extract), Probiotics, and Curcumin

23. Home Remedies Drink plenty of water Honey Aloe vera Salt water rinses Baking soda + Salt water rinse Avoid Very hot foods Sugary foods Spicy foods Rough foods

24. GI MUCOSITIS THINGS I ALREADY KNOW External beam irradiation to the pelvis as part of treatment for prostate, rectal, or cervical cancer produces lower GI injury. In a randomized, controlled trial of pelvic irradiation, sulfasalazine, 1 g orally, twice daily, reduces GI toxicity from 93% to 80% and diarrhea from 86% to 55%. THINGS I LEARNED Agents that should not be used to prevent radiation GI toxicity: glutamine, oral sucralfate, rectal administration of sucralfate, 5-aminosalicylates, mesalazine , and olsalazine .

25. SYMPTOMS Routinely Discussed Pain Xerostomia Oral Mucositis Nausea & Vomiting Diarrhoea Acute Dermatitis Urinary Symptoms No Routinely Discussed Fatigue Mood Dysfunction Female Sexuality Male Sexuality Psychosocial Problems Nutrition

26. NAUSEA & VOMITING Factors that influence radiation-induced emesis include Single And Total Dose Rate Fractionation Field-size And Irradiated Volume Site Of Irradiation And Organs Included In The Radiation Field Patient Positioning Radiation Technique, Energy, And Beam Quality Previous Or Simultaneous Influencing Therapy General Health Status Of The Patient THINGS I LEARNED

27. Home Remedies Ginger Cloves Sugar & Salt water Lemonade Saunf Deep Breathing Wrist acupressure

28. DIARRHOEA THINGS I ALREADY KNOW Diarrhoea usually occurs during the third week of fractionated abdomen or pelvic RT. For mild to moderate diarrhea, the initial management should include dietary modifications. Patients should eat small, frequent, protein-rich meals. Adequate fluid intake (35 mL/kg/day) is necessary. Liquids should be taken primarily between meals. Soluble fibers such as oats, pectin, guar, and psyllium help retain stool consistency.

29. Spices, alcohol, caffeine, high osmolar beverages, and high-lactose food should be avoided. Probiotic supplementation showed beneficial effect. THINGS I LEARNED Loperamide remains the mainstay of pharmacologic treatment. It should be started at 4 mg followed by 2 mg every 4 hours or after every unformed stool (maximum, 16 mg per day). If diarrhea has not resolved after another 24 hours on the higher dose of loperamide, the drug should be continued and a second-line agent, such as tincture of opium (paregoric), an antimotility agent, can be added. Diphenoxylate and atropine can also be used. Octreotide and glutamine have been studied and found of no benefit.

30. Home Remedies

31. SYMPTOMS Routinely Discussed Pain Xerostomia Oral Mucositis Nausea & Vomiting Diarrhoea Acute Dermatitis Urinary Symptoms No Routinely Discussed Fatigue Mood Dysfunction Female Sexuality Male Sexuality Psychosocial Problems Nutrition

32. ACUTE DERMATITIS & CHRONIC SKIN CHANGES THINGS I ALREADY KNOW Skin changes can occur at both the entrance and exit site of the irradiation beam. Severity is determined by the dose, fractionation, beam, volume, and surface area. Patient-specific factors also play a role, such as Poor nutrition status Pre-existing vascular condition or connective tissue disease Excessive skin folds, or genetics

33. Mild acute dermatitis is treated symptomatically. Washing with water, gentle cleansing with a mild agent, wearing loose, nonbinding clothing, and avoidance of irritants, antiperspirants, and ultraviolet exposure all help. When erythema and dry desquamation occurs, creams or ointments (petrolatum based, castor oil, balsam of Peru, trypsin, trolamine) can be used. Topical sucralfate or hyaluronic acid was shown to be efficacious in some controlled studies. Other topical agents containing aloevera , d-panthenol, almond, or chamomile can also be tried.

34. When acute dermatitis becomes severe, usual wound care should be applied to the erosions and ulcerations. Key measures are: Keeping the site clean and moist, Pain management, Protection from contamination, Debridement, and Infection control During radiation treatment, hydrogel dressings, hydrocolloid dressing, burn pads, or foam dressings can be applied. Topical granulocyte-macrophage colony-stimulating factor, tacrolimus, pimecrolimus , and platelet-derived growth factor also have some role

35. THINGS I LEARNED Chronic skin changes from radiation injury are harder to treat. Chronic fibrosis is associated with high incidence of skin breakdown and infection. A team approach should be adopted to address cosmetic and quality of life issues: Wound care, Physical therapy, Deep massage, and Pain management

36. Pentoxifylline ( Trental ) appears to have an antifibrotic effect. Oral pentoxifylline (800 mg per day) and vitamin E (1,000 IU per day) for 6 months significantly reduce radiation-induced fibrosis. Prophylactic use of pentoxifylline significantly reduces late skin changes, fibrosis, and soft tissue necrosis in a randomized controlled study, possibly through its protective effect against vascular pathology. Intramuscular liposomal copper or zinc superoxide dismutase, subcutaneous interferon-γ , or hyperbaric oxygen therapy has also been used.

37. Home Remedies Avoid wearing tight clothes in radiation area Don’t touch/ rub the irradiated area Avoid scratching in the radiation area Avoid using blade in the radiation area Coconut oil Sunflower oil

38. SYMPTOMS Routinely Discussed Pain Xerostomia Oral Mucositis Nausea & Vomiting Diarrhoea Acute Dermatitis Urinary Symptoms No Routinely Discussed Fatigue Mood Dysfunction Female Sexuality Male Sexuality Psychosocial Problems Nutrition

39. URINARY SYMPTOMS THINGS I ALREADY KNOW Irradiation to the pelvic region as part of treatment for cancer of the prostate, uterus, ovary, cervix rectum, or urinary bladder can cause urinary problems due to injury to mucosa, vasculature, and smooth muscles. Acute reactions occur within 3 to 6 months of treatment. Acute reactions present as dysuria, frequency, and urgency as a result of radiation cystitis.

40. THINGS I LEARNED Phenazopyridine (Pyridium) is usually the first-line treatment for acute symptoms. It is given at 200 mg orally, 3 times a day. Phenazopyridine accumulates in the urine essentially unchanged and acts as a topical analgesic within the bladder. Patients should be warned that phenazopyridine turns the urine into a bright orange color and can stain clothing. Oxybutynin or flavoxate help relax the smooth muscles and reduce urinary urgency and frequency. Tolterodine is a cholinergic antagonist that is also effective for overactive bladder. Trospium ( Sanctura ) was documented to improve symptoms in radiation-induced cystitis and is significantly better tolerated than immediate-release oxybutynin

41. Pentosan Polysulfate Sodium MOA in cystitis unknown; drug appears to attach to the bladder wall mucosa where it may act as a buffer to protect tissues from irritating substances in the urine It is a weak anticoagulant (blood thinner) which may increase bleeding. Indicated for bladder pain associated with interstitial cystitis 100 mg PO q8hr Administration: 1 hour before or 2 hours after meals with water Reassess every 3 Months

42. Intravesical infusion of hyaluronic acid or chondroitin sulfate, injection of botulinum toxin A into bladder wall, and hyperbaric oxygen therapy have shown benefit. IV WF10 ( tetrachlorodecaoxide ), an immunomodulator, was reported to be beneficial. In chronic changes dilatation or placement of a permanent catheter may be required for significant obstruction. Reconstructive surgery to repair the stricture, sphincter failure, or fistula can also be done.

43. Home Remedies Water Intake (2-3L/day) Frequent urination Vitamin C- specially from green leafy vegetables and tomatoes Garlic Parsley Cranberry juice Avoid drinking Alcohol Coffee Citrus juices

44. SYMPTOMS Routinely Discussed Pain Xerostomia Oral Mucositis Nausea & Vomiting Diarrhoea Acute Dermatitis Urinary Symptoms No Routinely Discussed Fatigue Mood Dysfunction Female Sexuality Male Sexuality Psychosocial Problems Nutrition

45. FATIGUE & MOOD DYSFUNCTION RT-produced fatigue typically is short lived and far less severe than chemotherapy-generated fatigue. One of the most common causes of fatigue is inadequate amount and poor quality of sleep. In a prospective study of 28 men receiving radical external beam RT for prostate cancer, the prevalence of moderate to severe fatigue increased from 7% at baseline to 32% at RT completion. Fatigue significantly interfered with walking ability, normal work, daily chores and enjoyment of life, but at 6.5 weeks of follow-up remained higher than at baseline. In a study, during and for 3 months after primary RT for breast cancer, fatigue increased from 33% to 93%, and gradual improvement occurred during the following 3 months

46. Cancer related fatigue is defined as a distressing, persistent, subjective sense of physical, emotional, and/or cognitive tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent activity and that interferes with usual function. Management approach: Education Behaviour changes Pharmacologic interventions Non pharmacologic interventions

47. Education of patient and family members should form the foundation of CRF management. Patient should be counseled on self-monitoring of fatigue levels, energy conservation techniques, and the use of distraction. Simple behavioral changes in daily life, such as Setting priorities, Pacing daily activities, Delegating as much as possible, Scheduling activities at times of peak energy, and Structuring a daily routine to promote quality of sleep Psychostimulants, such as methylphenidate or modafinil are being studied.

48. Non Pharmacologic Interventions Initiation of an exercise program Referral to physical therapy, occupational therapy, or rehabilitation medicine may help enhance activity levels. Psychosocial interventions can be implemented to address depression, anxiety, and adjustment disorders: Cognitive behavioral therapy, Educational therapy, and Supportive expressive therapy Massage therapy to reduce tension and stress is often helpful.

49. SYMPTOMS Routinely Discussed Pain Xerostomia Oral Mucositis Nausea & Vomiting Diarrhoea Acute Dermatitis Urinary Symptoms No Routinely Discussed Fatigue Mood Dysfunction Female Sexuality Male Sexuality Psychosocial Problems Nutrition

50. FEMALE SEXUALITY THINGS I ALREADY KNOW High-dose radiation to the pelvis causes varying degrees of sexual dysfunction related to injury to the ovaries and vagina. Acute injury presents as vaginal and vulval mucositis, pain, and ulceration. Chronic changes include Fibrosis Loss of elasticity and sensation Susceptibility to trauma and infection Postcoital bleeding Dyspareunia

51. THINGS I LEARNED Maintenance of local hygiene, aggressive treatment of infection, and regular dilatation of the vaginal canal help reduce the acute reaction. Hormone replacement therapy and application of lubricants for mucosal dryness can be used to treat acute injury. Use of vaginal dilators, lubricants, and supplemental estrogen to prevent chronic changes. Hyperbaric oxygen therapy or surgical reconstruction can be used in severe cases. Topical estrogen showed benefit and promotes epithelial regeneration. Benzydamine is an anti-inflammatory that also has analgesic, local anesthetic, and antimicrobial effects. Reconstructive surgery in cases of perineal defect or obliteration of vagina

52. SYMPTOMS Routinely Discussed Pain Xerostomia Oral Mucositis Nausea & Vomiting Diarrhoea Acute Dermatitis Urinary Symptoms No Routinely Discussed Fatigue Mood Dysfunction Female Sexuality Male Sexuality Psychosocial Problems Nutrition

53. MALE SEXUALITY THINGS I ALREADY KNOW When planning RT for prostate cancer, its effect on male sexual function must be discussed with the patient. A survey showed that 68% of men aged 45 to 70 years were willing to trade off a 10% or greater advantage in 5-year survival to maintain sexual potency. RT does not reduce testosterone production or cause pelvic nerve injury. Diminished sexual desire, decreased orgasmic pleasure, and a reduced ejaculation volume are reported problems.

54. Non Pharmacologic Interventions THINGS I LEARNED A multidisciplinary approach, including psychosocial evaluation and counseling, pharmacologic intervention, and exploration of the use of mechanical devices should be done The mainstay of pharmacologic treatment is phosphodiesterase inhibitors like sildenafil and Tadalafil Implantation of a penile prosthesis can be considered. Vacuum devices are another option Intracavernosal injection of prostaglandins or phentolamine papaverine is also effective.

55. SYMPTOMS Routinely Discussed Pain Xerostomia Oral Mucositis Nausea & Vomiting Diarrhoea Acute Dermatitis Urinary Symptoms No Routinely Discussed Fatigue Mood Dysfunction Female Sexuality Male Sexuality Psychosocial Problems Nutrition

56. PSYCHOSICAL PROBLEMS Coping, distress, and support are crucial psychological issues that need to be discussed with patient and their attendants. Coping with a serious medical illness can be very challenging for a patient. Common reactions at various stages of illness At the time of Diagnosis Advanced Stage Terminal Stage Shock Fear Regret Emotional Numbness Sadness Guilt Disbelief Guilt Hopelessness Denial & Anger Helplessness

57. Stage-Specific Coping Challenges and Medical Responses Stage of Cancer Coping Challenge Physician Response Initial Diagnosis Existential anxiety Rapid and clear evaluation Acute Treatment Helplessness Invite participation in treatment decisions Fatigue/ disruption of social rules Invite involvement of family/ friends End of acute treatment Increased sense of vulnerability/ anxiety about relapse and long term treatment effects Treatment summary and long term follow up plan Medical Isolation Survivorship program Relapse Anxiety about disease progression/ treatment effects Clear communication compassion Truncated future Commitment to providing care Loss of social contacts Reordering priorities group and other support

58. THINGS I LEARNED Psychoeducational Interventions Coping skills training Mindfulness training Electronic Technology-Based Interventions Cognitive- Behavioral Therapy Group Psychotherapy Psychotropic Medication Antidepressants SSRIs Antiaxiety agents

59. SYMPTOMS Routinely Discussed Pain Xerostomia Oral Mucositis Nausea & Vomiting Diarrhoea Acute Dermatitis Urinary Symptoms No Routinely Discussed Fatigue Mood Dysfunction Female Sexuality Male Sexuality Psychosocial Problems Nutrition

60. NUTRITION Integrate Nutrition into the overall treatment plan Nutritional recommendations include a high fat and low carbohydrate feed High caloric density feeding Improve lean body mass Low carbohydrate content “Starve the tumor, feed the patient” Suggested composition: High energy > 1.2 – 1.5 kcal /ml High fat 45 - 50 % and low CHO High protein 18 - 20 % (50% - Fat, 20% - Protein, 30% - CHO)

61. Incidence Of Malnutrition In Different Tumor Sites Tumor Site % Malnutrition Advanced Stage Patients 60% Oesophagus 79% Breast 9% Gastric 83% Lung (small cell) 50% Head and Neck 72% ( Adapted from Freeman 2004)

62. THANK YOU