How I educate and connect with patients about their Quality of Life

“The Quality of Life of patients does not only mean performing assessments through validated questionnaires or the management of side effects due to medication. Dialogue with the patient, his/her partner and the caregiver is essential.”

CNTillierBy Ms. Corinne Tillier, NKI-AVL
Urology Department, The Netherlands Cancer Institute

What is your role in terms of enhancing the patients’ QoL during treatment?
The evaluation of Quality of Life (QoL) begins before any treatment. We need a baseline to evaluate the global QoL. We send validated questionnaires to patients who will undergo prostatectomies such as International Consultation on Incontinence Questionnaire – Short Form (ICIQ-SF), International Prostate Symptom Score (IPSS), EORTC QLQ-C30, International index of erectile function (IIEF), and EORTC QLQ-PR25. And we also evaluate the Lower Urinary Tract Symptoms (LUTS) and sexuality/erection.

Patients have to make a choice among several treatments such as brachytherapy, external radiotherapy, or prostatectomy. Sometimes they can choose active surveillance (AS). I explain to them all the possible complications of the different treatments. Then I ask them to make a choice focusing on their QoL after treatment. They have to think about which complications are tolerable to them. For patients who would choose AS but who absolutely want a treatment, I ask them to think about their QoL now, especially the patients who do not have any LUTS or/and patients who have good erectile function and who want to keep it.

Shortly after prostatectomy, we explain the exercises for the pelvic floor muscle training for incontinence. We also propose a penile rehabilitation and oncology revalidation.

What are your daily practices at work that contribute to patients’ QoL?
As a Urology Clinical Nurse Specialist, I am a permanent contact for the patients. We build a relationship of trust. The patients are free to contact me if they have an issue. The Quality of Life of patients does not only mean performing assessments through validated questionnaires or the management of side effects due to medication/surgery. Dialogue between the patient, his/her partner and the caregiver is essential.

Prior to the consultation with the patient, I check their answers on the QoL questionnaire. Then I always begin the discussion with the patient about issues I have noticed on said questionnaire. The partner also plays an important role in this dialogue.

What are the common discomforts your patients experience?
After prostatectomy, my patients generally experience urine leakage or full incontinence, erectile dysfunction or impotency, or lymphoedema in case of pelvic lymph node dissection.

For my patients treated by hormonal therapy, they endure hot flashes, weight gain, fatigue, gynecomastia, or depression.

After nephrectomy, my patients usually feel fatigued shortly after the surgery. Recovery time about takes two months.

What kind of advice would you give patients and their families to improve their QoL?
When my patients are coping with incontinence, I advise them to begin their pelvic-floor-muscle training before the prostatectomy. They should keep exercising after the prostatectomy but they have to make sure the transurethral catheter is removed first! I also encourage them to go to the physiotherapist for exercises.

For my patients who are suffering from erectile dysfunction, I advise them to take the PDE5 inhibitor as soon possible after the prostatectomy. If it doesn’t work, I advise intracavernous injection therapy or the use of vacuum pump.

I advise my patients who experience fatigue to try to stay active. Walking is good; I actually advise Nordic walking to patients who are treated by hormonal therapy as it can prevent osteoporosis. Rest is good but not too much.

What is your role to better the patients’ QoL post-treatment?
Patients who undergo Robot Assisted Radical Prostatectomy (RARP) stay only one night at the clinic. Before the surgery, we propose a group education where we explain what the patients can expect during the hospitalization shortly after the prostatectomy.

Three days after surgery, I call the patients to check if everything is going well. Patients appreciate this call because most of the time, they are very uncertain about the catheter, the wound, and the leak through the drain opening.

Approximately seven to 10 days after surgery, the patients come back to the hospital for catheter removal. They are often uncertain and worried about incontinence. I try to reassure them and encourage them to exercise the pelvic floor muscle. I explain to them that they have to be aware that a RARP is a major surgery; they usually forget that because they do not have big wounds . I also ask them to not lift heavy weights.

Complete recovery takes about eight weeks, except for urine leakage and erectile dysfunction, which take longer. During this period of uncertainty – briefly after discharge – I am always available to answer questions from patients. They can always call me or my colleagues via a direct telephone number.

Please describe a specific case that you can recall which would be a good example) of your role as a nurse improving patient QoL.
Last week, I saw a patient who complained about incontinence after prostatectomy. Before the surgery, he ran 10 kilometres daily. He had a busy social life; he was a member of a golf club and went out quite often. But after catheter removal, he was completely incontinent. I realised immediately that explaining about the pelvic floor muscle’s exercises was not enough.

I asked the patient to make an appointment with a physiotherapist. A week after the catheter removal, he used 10 pads a day. He called me nine weeks after his surgery. He cried on the phone because of the complications and frustrations the incontinence caused. I asked him to come to the clinic immediately.

He told me that he does not have any quality of life since the surgery. He does not dare to go out, to go to the golf club, to run, or to go to the cinema, restaurant, etc. He had the feeling that he smelled like urine all the time. I then evaluated his incontinence and compared to what it was a few weeks ago. The incontinence had improved. He was not completely incontinent anymore and only used three to four pads a day. I informed him about this improvement and explained that recovery takes time. I encouraged him to have a social life again. I explained to him that if he gets anxious and scared when does activities or goes somewhere, the solution could be a condom catheter but to keep doing the pelvic floor muscle exercises. And it was during the conversation that I realised that he often forgot to do these exercises! In the end, the patient was pleased and went to the golf club a few days later. This was his first time in 10 weeks!

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Read “Web-Based Quality of Life Questionnaire Followed by Paper-Based Questionnaire for the Non-Responders: Daily Practice in Patients with Prostate Cancer” by Tillier CN1*, van Stam MA2, de Blok W1, van Muilekom HVM1, Bloos-van der Hulst J1 and van der Poel HG1. The objective of the study is to investigate what the response rate was to digital questionnaires and which factors predict the response to the web-based and paper-based questionnaire.

1The Netherlands Cancer Institute, Amsterdam, The Netherlands
2University Medical Center, Utrecht, The Netherlands

Posted: 16/08/2016