measurement

Australia published a national model setting out what survivorship care should contain: stratified pathways by need, a treatment summary and care plan, a focus on wellness and prevention as well as surveillance, and timely access without unnecessary appointments. Exercise is recommended as part of routine cancer care by the same body.

Germany does something no English-speaking country does: it funds a three-week structured rehabilitation stay after cancer treatment as an entitlement, inpatient or full-day outpatient, through the pension insurance system. Retired people and some non-insured relatives can have it too.

Most people in the world who survive cancer are offered no survivorship care at all. Specialist centres are rare, follow-up is limited, late effects are poorly documented, and the household pays. This is the largest gap in recovery care anywhere, and the one with the thinnest evidence base.

Denmark, Norway and Sweden build rehabilitation and a named contact person into the national cancer pathway rather than leaving them to be requested afterwards. Even in tax-funded systems designed around need, the published work finds that socially disadvantaged people take up less of it.

In England the offer has four named parts: an assessment of what you need and a plan written with you, information and support about living well, a summary of your treatment sent to you and your GP, and a review with your GP. Follow-up is increasingly not a routine clinic appointment but a pathway you manage yourself, with tests at set intervals and a route back in.

A questionnaire built from what women actually said matters after breast surgery: satisfaction with how the breasts look and feel, and psychological, physical and sexual well-being, each scored separately. It is the reason reconstruction techniques can be compared on something other than complication rates.

A bike or treadmill test to exhaustion with a mask measuring the air breathed in and out, giving peak oxygen uptake. It is the most objective measure of what a body can do, and in breast cancer it showed that survivors sit around a quarter below healthy women of the same age across the whole survivorship continuum.

Thirty questions, answered about the past week, that produce separate scores out of 100 for how the body works, how the mind is, and for fatigue, pain and sickness. It is the questionnaire behind most European cancer trial results about quality of life, and there are add-on modules for individual cancers.

Five questions and a thermometer-style scale from worst to best imaginable health. The five answers are converted into a single index value using a country-specific value set, and that index is what health systems use to decide whether a treatment is worth paying for.

Structured exercise has the strongest evidence of any recovery intervention, including a randomised survival benefit in colon cancer. In a population survey of blood cancer survivors, 46 per cent met neither the aerobic nor the strength guideline and 22 per cent met both, and meeting both was associated with having been to university.

Twenty-seven questions about the past week, in four areas: the body, family and friends, feelings, and being able to do ordinary things. Dozens of add-ons exist for particular cancers and particular symptoms, including the fatigue scale used in most anaemia and fatigue trials.

Nearly every figure about recovery after cancer, for fatigue, for quality of life, for how a body works after treatment, comes from a questionnaire somebody filled in about themselves. That is a strength, because nobody else can report how a person feels, and a limit, because a questionnaire only measures what it asks about and only from the people who answered it.

The most commonly reported unmet need after cancer treatment has a questionnaire of its own. The full version has 42 questions across seven components; the nine-question short form is the one used to screen, and a score of 22 or more marks a level of fear that merits help.

There are two separate questions, how big the limb is and how much it affects the person, and they need different instruments. Limb volume is measured by tape, by water displacement or by a device that passes a small current through the tissue; the effect on living is measured by a questionnaire such as LYMQOL.

What a person notices about their own memory and what a formal test measures are two different things, and they agree only weakly. The questionnaire most used for the first is FACT-Cog; the tests used for the second were standardised by an international task force so that studies could be compared.

A single slice of a CT scan at the third lumbar vertebra measures how much skeletal muscle a person has, and the scan has usually already been taken for staging. Low muscle predicts worse outcomes and more chemotherapy toxicity, including in people whose weight looks normal or high.

Clinicians have always graded side effects themselves, and they systematically under-record them. PRO-CTCAE is the matching set of questions asked of the patient instead, in plain language, about how often a symptom happened, how bad it was and how much it got in the way.

Instead of a fixed questionnaire, PROMIS is a library of calibrated questions for things like fatigue, pain, anxiety, depression and physical function, built so that a computer can pick the next question based on the last answer and reach a precise score in a handful of items. Scores are set against the general population, not against other cancer patients.

Physiotherapy, occupational therapy, speech and swallowing therapy and lymphoedema services are the treatments for most of what cancer treatment leaves behind. The measured use of them after cancer treatment is a small fraction of the measured need, and the people delivering them say they were not trained for it.

In a trial measuring how people feel, the forms go missing exactly when people are most unwell. That makes the remaining scores look better than the truth. The same thing happens on a larger scale when whole groups are not asked at all.

How far somebody walks in six minutes, how hard they can squeeze a handle, and how fast they can stand up from a chair five times. These need almost no equipment, they predict what happens to people, and they measure something a questionnaire cannot.

A wrist or hip device records steps, activity and sleep continuously, at home, without anyone being asked a question. It measures behaviour rather than capacity, which is the gap a corridor test leaves, and it is the one measurement of recovery that does not stop when the person leaves the hospital.

A trial can report a statistically significant change in a quality of life score that no person would notice. The minimally important difference is the attempt to say how much a score has to move to correspond to something a patient would call a change, and it differs by questionnaire, by scale, by cancer and by direction.

The trials finished years ago and most people being treated for cancer are still not asked their symptoms between appointments. The clearest thing that changed is a United States payment model that now requires practices to collect them.

In Germany rehabilitation is an entitlement with the outpatient version free to the patient. In most of the world there is no survivorship service to be charged for, and the household pays for whatever follow-up happens. Reliable comparative figures do not exist.

Cancer treatment makes prescriptions free in England for five years, but a wig is not a prescription and is charged for unless you qualify for help. A third of UK survivors in one survey still reported financial difficulty, which is lower than the United States and a long way from zero.

More than half of United States survivors in a comparative survey reported financial difficulty, against a third in the UK. What a person pays for rehabilitation, psychological care, fertility preservation and a wig depends on their insurance, their state and their employer rather than on their cancer.

Fertility preservation has to happen before treatment starts, which makes it the most time-critical part of recovery care and the easiest to miss. Published United States rates of even having the conversation range from 9 per cent to 75 per cent depending on where a young woman is treated.

Every part of recovery care is unevenly distributed, and the pattern repeats: people with less money, less education, more disability, who live further away or whose cancer is less common get less of it. These are measured gaps with sources, not an impression.